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"Roll Call" for those who've stopped Hormonal Therapy early



  • arc66
    arc66 Member Posts: 8
    edited April 15

    Hi all,

    The only question that I would strongly urge any person considering to come off an anti estrogen tablet (tamoxifen/anastrozole) is “did I have node involvement “

    Metastatic cancer is more likely to be diagnosed in the future IF the nodes were removed because breast cancer was detected in them at the original stage (i) (ii) (iii).

    Just something to be fully aware of and to discuss with your Onc.

  • oldladyblue
    oldladyblue Member Posts: 289
    edited April 15

    Racheldog - I edited the original post to include "never started" hormone therapy, as perhaps more women will chime in on this thread with their decisions, reasons why, and then with results of cancer checkups over the coming years. Like you said, "There are not enough gals on this forum to post whether they never went on them and never got any recurrence or spread?" Breast cancer treatment is such a "crapshoot" as has been stated before many times. We all suffer emotionally and physically from first diagnosis, all through treatment, and on into the future as we always carry a worry about recurrence. Thank you to everyone who is posting and keeping this thread alive. Hugs to those who are now fighting Stage 4.

  • threetree
    threetree Member Posts: 1,035
    edited April 15

    arc66 - From what I have read, like you said, node status is very important and plays a big role in recurrence. I would like to add to that and say that so does tumor size, and according to some studies, if the tumor is large enough, the node status is irrelevant. Tumor size alone is a huge predictor of recurrence with or without nodes.

    I had a 5-6 cm tumor, no nodes, and no visible spread anywhere back in the fall of 2018. I started Letrozole in January of 2020, after a year of neo adjuvant chemo, surgery, and then proton radiation. I only took it every other day, due to side effects, and contrary to the oncologist's wishes. This past January (3 years after beginning the Letrozole) I went to the ER for some sudden and strange breathlessness and they discovered all sorts of metastases in my spine, ribs, and sternum. I had had no node involvement and I was taking the letrozole on a schedule that some doctors say is just about as good as every day. I can't help but think that it was indeed the size of my original tumor that could have/would have predicted that I would recur and become stage 4.

    Also, at the time they told me of the mets and I had CT and bone scans scheduled, I stopped the letrozole altogether on my own, because I was starting to have so much pain from the mets, that I couldn't stand it along with the letrozole joint and muscle pain and also wanted an opportunity to figure out what was what. Well since stopping the letrozole a good month ago, my head is so much more clear and mentally I feel much better all around, even though I plunge into the depths of despair rather frequently over this new stage 4 diagnosis. Yes, I still feel better without the letrozole and could not imagine taking it now. I still have all sorts of joint and muscle aches, but some say it can take months after taking an AI for those to disappear and that sometimes they never go away completely. Very unfortunately, I am now scheduled to begin another anti-estrogen treatment (fulvestrant/faslodex) next week. I understand it has side effects that are just as bad or worse than the AI's - this one can even cause blood clots apparently, and it has to be injected into your hind end very slowly. You just can't win with this stuff!

    OldLadyBlue - Thanks once again for starting this thread and for keeping it going. It is so useful to so many!

  • mavericksmom
    mavericksmom Member Posts: 997
    edited April 15

    arc66 and threetree, while node status and tumor size are both very important I believe individual risk of breast cancer is 50/50 for everyone.

    I was diagnosed with a new breast cancer three times! My tumors were small, between 1cm-1.5cm. Nodes were neg first time, IDC, but she took out 24 and my MO said when they take out so many, they miss cancers because they do not check them the same as they do for sentinel nodes. (that was in 2003, so things may have changed now) My second DX was in Dec 2018 ILC, 1.5cm on same side. I only had a left mastectomy and Letrozole for 6 months.

    I wish I had a $1 for every time I was told my one of my breast cancer team that I didn't need to worry about getting breast cancer again, that I had a slim to none chance of getting it in my opposite breast! They were so sure of that, they refused to give me a bilateral mastectomy that I requested!

    Guess what? Three years later, August of 2022, I was diagnosed with IDC in my other breast! Treated with mastectomy and Letrozole.

    I was tested for 54 genes, none of which had a known defect, yet my mother, and two of my sisters and a cousin on my mother's side all had breast cancer. My oldest sister had breast cancer and non-Hodgkin's lymphoma at the same time and died at age 66 from a third cancer, MDS, they said likely came from all the radiation from treating the other two!

    I am back on Letrozole even though I would prefer not to be. I have appointments with my doctors to be sure what I am feeling now isn't due to metastasis.

    Take and AI or don't take an AI, but I will NEVER believe statistics again! If you have a breast, you can get breast cancer and you can get metastasis!

    I don't regret that I stopped the Letrozole in 2019, I did what I thought was best for me at the time. But, I would tell anyone trying to decide if they should start taking an AI or Tamoxifen to forget what their so-called odds of getting bc or mets are for them, and look at it as a 50/50 chance. Then decide.

  • threetree
    threetree Member Posts: 1,035
    edited April 15

    Very good point, Mavericksmom!

  • irishlove
    irishlove Member Posts: 331
    edited April 16

    Just the topic I've been searching for to offer up my advice.

    2019 I was diagnosed with Encapsulated Papillary Carcinoma. Supposedly an indolent form of breast cancer with an extremely low risk of recurrence. I had both breasts removed within 2 months of each other. I had already had a hysterectomy 30 years ago. As I am number 6 in the family with breast cancer, I was covered by insurance for genetic testing. I am positive for RAD 50 (no other relatives were tested in the past), a gene of unknown importance at the time.

    Due to MS and having zero lymph node infection, the MO let me off the hook for estrogen suppression medication, but only because I requested to forgo the meds.

    Fast forward 4 years later and I am now Stage 4. Yes it is the same breast cancer with a variation from papillary to micropapillary. I can tell you it's only been a month since my diagnosis and I am struggling with a pleural effusion, tumor of 5 cm in the pleura of my lung, hospitalized a total of 10 days to save my life from horrible pneumonia and inserted a lung drainage tube. My husband taps the drain every 3 days and believe me it is very uncomfortable to painful as the tube slips under my diaphram.

    I just started estrogen suppression in the form of two shots (one each hiney cheek that is intramuscular and painful). Monday is my first infusion to strengthen my bones as we believe the cancer may be in my bones as well as lung. I had a pet scan Wednesday but haven't seen the results yet with onco appt. not until 4/27.

    So here I am, age 67, co-raising a 9 year old grandchild with my husband and her Mommy (who is quite ill herself), and so weary already. Take the hormonal treatments, as someone that was stage 0 who became stage 4 in 4 years, wish she had done.


  • debal
    debal Member Posts: 600
    edited April 16

    irishlove, I'm so so sorry for all you are going through. We all make the best decision at the time. Hoping for no bone Mets and will be thinking of you on the 27th

    Not sure if I fit in here but due to stop AI in June after 5 years. Not really quitting 'early' but now starting to second guess whether I will continue on if the 7-10 year plan is offered at my next appt.

    I'm sorry to those that are dealing with progression or dealing with this again. I'm not sure the guard ever goes down. Take care all

    IDC 2018 1cm er+ ( low), pr neg (who knows if taking this damn 💊 for 5 years is beneficial) bilateral mast/ reconstruction, nodes clear, TC×4, Arimidex almost 5 years.

  • mavericksmom
    mavericksmom Member Posts: 997
    edited April 16

    irishlove, I too am so sorry to hear what you are going through! I agree 100% with debal, we do what is best for us at the time.

    debal, good call to stay on Arimidex as long as they recommend as long as you are doing well on it! My cancers were all NEW cancers, not recurrences. Would I have gotten the last dx if I stayed on Letrozole, who knows? I don't regret that I went off of it because I know I did what was best for me at the time. This time, I plan to stay on it until my MO says to stop!

    I am having new bone pain, and scheduled an appointment with my doctor next week to get help finding out if it is from the Letrozole, bone metastasis or osteoarthritis. Could be from any of those. If it's from Letrozole I would continue to take it for now. If the pain got worse, I would switch to another AI but not quit again.

  • oldladyblue
    oldladyblue Member Posts: 289

    Now that I have Medicare as well as the VA for medical, I have a new additional primary care. Oddly enough, she was an oncologist for 7 years of her past, I didn't know that when I was assigned to her. She is NOT pressuring me about AIs, in her words "some survivors take them and get a metastasis, some don't take them and are clear for decades. But doctors are expected to recommend them". I do still wonder if I should have tried another type, rather than have gone off totally last year, but I decided what I decided.

  • oldladyblue
    oldladyblue Member Posts: 289

    "If you quit or reduced hormone therapy and don't mind sharing future status at least once a year, could you share concisely current cancer status (no evidence of disease, metastasis, new breast cancer) or other health facts? This will give an easy to follow thread of results of quitting. It is such a gut wrenching decision to quit. I am haunted by it still. What do you think? Would you sign up?" (Original post)

    It seems this thread has stalled, so I wanted to breathe new life into it. When I posted it originally, I thought maybe more people would give short medical status updates after taking/stopping/never starting hormone therapy. I thought it would be good to have a sort of info gathering thread, with short updates a few times a year.

    I am very sorry to see recent posts of those whose cancers returned or metastasized. It is good of you to share despite the pain. I hope that longer conversations on other threads or private messages happen after a status post here.

  • homemom
    homemom Member Posts: 775
    edited July 6

    Pokemom - I threw everything at this thing too. I didn't have large breasts, as a matter of fact, I had had a breast augmentation 7 years earlier so I did the mastectomy when the lumpectomy didn't come back with clear margins. I had 2 macromastia and 2 with "specs" in my nodes, so they counted them - total 4 positive.

    I'm on my 9th year of Arimidex and luckily no side effects (other than osteopenia and thinner hair). My MO still wants me to do the entire 10 years "The longer the better" according to her. It's all about a study that showed 7 -10 years was better than 5.

    My grade was grade 1, and while I don't know that I'm free and clear (is anyone?) I am starting to think that grade is one of the factors that will determine if there is a reassurance. If you were a grade 3 and high % of ER and PR, but didn't take an AI or chemo or whatever, does it greatly increase your chances of a recurrence?

    I say this because a lady I know was diagnosed when I was, and she said she had one node positive but wasn't getting chemo. I was shocked since my breast surgeon stated if you have any nodes positive, she suggested chemo. I don't recall her exact diagnosis, but she now has stage 4. While there are patients who do everything they are told, and still end up stage 4, it also seems that if you can do it all, your odds are better. I just don't know.

    I am worried about stopping the AI to be honest. It's like a safety wall around me.

  • brutersmom
    brutersmom Member Posts: 765

    In 2015 I was diagnoses with Micropapillary CA Er+80 Pr+70 Her negative 1.4. Oncoscore 24. Was told I should have chemo but it was my choice. I did not have chemo. In 2015 there was very little information on Micropapillary cancer like there is now and it turn out the chemo therapy is no longer recommended for people without lymph node involvement. For me this risks out weighed the benefit. I had a lumpectomy with clear margins no lymph nodes. I took Arimidex from 2016 to 2017. The side effects were brutal. I did not sleep, I was angry all the time. I would cry a lot. I wanted to die and did try to commit suicide. My MO said there was nothing he could do for me about my physical response so I quit. My surgeon was very understanding and suggested I start exercising. I did. I joined a gym and took classes. I was 63 and it took a while to be able to really do all the exercises. Fast forward January of 2023. I started having trouble breathing. I found out that the cancer had returned to the pleura of the lung. Tests showed that this was the only area of mets. It is the same cancer but it is ER 90 PR 2 Her neg. 1.4 KI67 40. Two docs have told me that distant met after 7 1/2 years usually happen no matter what treatments I did or didn't do. They don't really understand why. I am now on Ibrance and Letrozole. I have a different oncologist. He is a palliative care oncologist. He has me on 2 meds to control the side effects of Letrozole. He wants to keep me on my first line of treatment for as long as it works and the side effects can be managed. By the way, don't rule out the benefits of exercise. My dexa scan improved for being close to zero to 1.

  • bennybear
    bennybear Member Posts: 244

    This is an interesting thread! I had a small IDC in 2010 with lumpectomy, 2018 same breast again, mastectomy and 6 months on AI with severe bone loss in spine, and in 2020 a stress fracture in femur as a side effect from bone meds. Uterine cancer in 2020 and another IDC again in 2023 with neuroendocrine features in other breast. Mastectomy and recommending tamoxifen. Such a crap shoot, I have a low onco type of 6, but having already had uterine cancer and with the 5% blood clot risk for me I’m not sure it’s worth the 2% benefit.

    Seems we’re dammed if we do and also if we don’t.

  • oldladyblue
    oldladyblue Member Posts: 289

    Hi bennybear, I do understand the question of if a 2% benefit is worth it or not. My oncotype was much higher, at 28, with only a few percentage points benefit from chemo. I was sort of "bullied" by 3 different docs to do the chemo (at 25 or below chemo would have had no benefit). Same for the AIs, but those side effects everyday made me say no after 4 months. Plus the doctors all had different ideas of the benefit percentages. IT seems that all choices are sort of a crap shoot, for sure.

  • hangin
    hangin Member Posts: 20
    edited July 29

    Hello Oldladyblue ~ Thank you so much for starting this thread / along with edited re: "never started" hormone therapy. It will be 1 year this September since my bilateral mastectomy. Pathology confirmed right breast lower outer quadrant, IDC (NST) Stage TIA (2.3mm) High Grade 3, Node Negative 0/3, No Vascular Involvement, ER+, PR+, = Both Strong 91-100%, HER2- Negative FISH ratio 1.3, Ki67 42%, Clean Margins >5mm (right breast small DCIS High Grade 3, ER+, PR+, HER2- Neg, UDH, Intraductal Papilloma, Duct Ectasia, Apocrine & Fibrocystic Changes also noted) So far still NED. I did not have chemo or radiation, nor did I do any hormone adjuvant therapy as consult with medical team panel conferred 1% to 2% benefit. Wishing you all the best of everything always 🤗

  • Leidy
    Leidy Member Posts: 5

    For mental health reasons, I could not tolerate anti-hormonals. They made me want to die, so I figured and still figure that I would/will have lots more time here if I stopped taking them. Diagnosed Stage 3 w a lot of positive nodes in 2015. Still here. Still cancer-free as far as anyone can tell. I do not regret my choice. We are all individuals, so my choice is just my choice.

  • mavericksmom
    mavericksmom Member Posts: 997

    It is a crap shoot no matter what. The whole 5 yr plan was to get people past the 5 year mark cancer free.

    Do aromatase inhibitors work, short answer yes.

    Should everyone stay on them. IMO, NO! I refused tamoxifen in 2003. I had 15 1/2 years cancer free. Then in 2018 I was diagnosed with ILC, new cancer not recurrence, in same breast. I was refused a bilateral mastectomy from a BS at a very well known cancer hospital in Philadelphia because he lied to me and told me it was against hospital policy to remove a healthy breast. I took Letrozole for 6 months until it raised my cholesterol. I quit and was happy I did.

    In Aug. 2022 I was Dx with IDC and DCIS in my remaining breast. Would that have happened if I was on Letrozole? Who knows? Or would it, as I suspect, simply have postponed it until I was older and in worse shape to be able to be treated?

    I have no regrets that I stopped but was talked into going back on it after my 2022 Dx. I have been on it about 10 months and have had no side effects that I am aware of. Some minor issues I am having may be from the letrozole but I don't know for sure. I was put on a cholesterol medication in 2019 and was never taken off of it but I take the smallest dose it comes in and my cholesterol levels have been in the normal range. I will stay on Letrozole until fall of 2024, but don't know if I will stay on it longer. If I am doing ok on it without any side effects, I will stay on it, if not, I won't. My MO talked as if I would be on it longer.

    Remember, taking an aromatase inhibitor is like buying insurance. You are assuming you might get cancer again, so you take it, but the fact is that no one knows for sure if you would ever get it again. My SIL had breast caner with a single mastectomy almost 30 years ago, was never on an AI, and so far has been cancer free.

    What I will say, is don't feel guilty if you stop it. I felt enormous fear of it back in 2019 when I agreed to be put on it and enormous guilt when I quit. Please don't carry around quilt if you quit! It's OK. I have zero regret that I stopped in 2019! If there is any blame to go around relating to my getting a third diagnosis, it goes squarely on the BS at the cancer hospital who denied me a bilateral mastectomy. Sadly, he passed away in 2021, so he never knew what his denial did to me. (and likely others)

  • desdemona
    desdemona Member Posts: 10

    Well, it's been 9 years since my first diagnosis, and two spots of the original breast cancer have "come alive" in my axillary nodes - a 22mm and an 11mm. I am told it was probably there with the original surgery when the sentinel nodes were negative and went dormant with the original treatment. I quit taking the AIs after 4+ years of intolerable side effects. Maybe I should have sucked it up and kept taking them ... I really don't know how I could have ... but here I am facing chemo, faslodex shots and herceptin/perjeta. So, if my old self could have seen in the future, maybe I would have taken the AIs. Now I've learned that sentinel node screening isn't always right. I put my faith in everything I was told originally ... including the cure!! And now I'm again told this treatment is curative. So, maybe, if you can find a way to tolerate the AIs, it might be a good idea.

  • e97
    e97 Member Posts: 1

    Hello, I was put on Arimidex first, I did 16 months and could not do anymore, it was too debilitating, barely walk. Surgeon said stop, then he said he’d write to my MO to plant the seed to put me on Tamoxifen, had a month break, well it was ok at first, then aches and pains came in, I was exercising 30 mins about 5 days a week, and losing weight, however I happened to bring my Oncologist appointment forward by 2 months and complained about pains in my back. Long story short sent for scans, then a more in-depth chest scan, a Pulmonary Embolism was found, they urgently put me on an anticoagulant (Xarelto) then the Oncologist wanted me to try Exemestane.. She said have a break, I had a good month. Well absolutely extreme lower back pain to the point I couldn’t move. I stopped the Exemestane, still so much pain, so much. When I asked the Nurse how long on Xarelto he said a long time, I’m guessing while I did another 2 &1/2 years on the exemestane. I want off them. Low back pain is a side effect. I stopped the Exemestane to try sort out the back pain. I see the Oncologist this week, I can’t exercise, get around. One drug for something which causes another life threatening problem, so another drug causing dreadful side effects.
    I was diagnosed in July 2020 Er+ Pr+ Her2- stage 1A, grade 1 Ki-67 10

  • mavericksmom
    mavericksmom Member Posts: 997

    desdemona, I am so sorry you are going through this now! If it is any comfort, I absolutely DO NOT believe staying on the AI would have made a difference. If you had the Oncotype test, it always leaves a percent of recurrence along with the percent of "no recurrence," so they are up front that AI's are not perfect, not 100% effective.

    e97, likewise my heart breaks reading your post! What you said about one drug needing another to combat side effects and then another and a so on, is spot on!

    I hate that so many have to suffer so much!

    I have no regrets refusing Tamoxifen and later only staying on Letrozole 6 months. That said, so far, I am on Letrozole, but I 100% believe I will have cancer again at some point.

    You both have a long, rough, road ahead of you so PLEASE DO NOT WASTE TIME FEELING REGRET FOR YOUR PRIOR CHOICES!!!! The best any of us can do is make the best decisions given what we know at any given time.

    Please keep us updated here, ((((desdemona))) (((((e97)))) cyber hugs to both of you!

  • desdemona
    desdemona Member Posts: 10

    Thanks, mavericksmom!!

    So, this is what I'm being told — the axillary lymph nodes (2) that are showing up with the original cancer have been there since the beginning. They didn't light up for the sentinel blue dye so everyone thought I was clear. They went dormant from the treatment and now have awakened — but everyone says I'm lucky. The offending nodes full of BC were found by accident apparently before the cancer escaped — I don't believe it for a minute — but the docs are saying I'm still curable. So I was curable 9 years ago too. Being cured doesn't mean the same thing it used to mean. 😀

    So, Monday, 8/28, I start navelbine, herceptin, perjeta — weekly for 12 weeks — then surgery, axillary lymph node dissection, on 12/12 — if there is no cancer then I continue herceptin & perjeta for the rest of the 12 months and take an AI for the rest of my life — and, bingo, I'm cured. The docs wanted me to take taxotere and some other chemo that starts with a C — but those chemos would be too toxic for my liver, which was previously damaged by all this toxic stuff. A 2nd opinion doc told me they use navelbine sometimes for women who are waiting for a liver transplant and happen to get breast cancer too. So, that put it in perspective for me — I could be in a worse situation.

    As for the AIs, two docs have told me that they have observed that older women don't experience the side effects of AIs as much because they are many more years out from menopause and their bodies are used to the lack of estrogen. Well, I was 60 the first time —- and now I'm just days away from 69 … sounds like another medical myth to me.

    I have a wry sense of humor —- don't mean to be offensive or inconsiderate about this crazy situation but it is was it is and I guess I have to "woman up". Apparently there are enough newer treatments available to keep me with a decent quality of life for my expected life span. If navelbine, herceptin, perjeta don't work, they will switch me to tdm1. But then there is my liver — and it will decide.

    I admire each and every one of you and appreciate your being here and your support. I am encouraged by the genetic reports being done since my first BC —- oh my lord, as we say, that is what is going to cure this disease and the generations that follow will not have to deal with this barbaric chemo treatment.

  • m_and_g
    m_and_g Member Posts: 6

    Hello everyone, I am a silent member and never post but I am considering stopping my Letrozole. I have been taking it faithfully for over 4 years and only have until April of 2024 to finish but I am so tired of the side effects I want to stop. I am tired all the time, and basically am not the person I once was somewhat depressed, mental function has deteriorated, dry everywhere, etc. Just difficult to hang on these last few months. I took a 2-week break and started feeling so much better. My mind was sharp and clear. Then I got scared and started Letrozole again.

  • amycinny
    amycinny Member Posts: 11

    first time, I could only do 2 yrs, 2 months on Tamoxifen. Next time, I made it almost a year on Arimidex. I think the drugs broke my hypothalamus-I’ve been coping with severe hot flashes for 22 years and counting. And that translates to disrupted sleep as well. I tried everything including acupuncture which provided complete relief for several years and then stopped working. Despite that, I stopped the aromatase inhibitors not from hot flashes, but when I became so crippled that I could no longer get up from sitting or driving, nor could I turn over in bed. It’s clear to me that my body loves estrogen.

  • mavericksmom
    mavericksmom Member Posts: 997
    edited August 23

    Moderators and Everyone here, it feels as if the scientific community is satisfied with Tamoxifen and AI's.

    We are NOT! Have they given up work on a new medications that do NOT involve trying to stop estrogen production that coming with a slew of unwanted SE's?

    I feel we have been abandoned, it is as if the scientific community is saying "pick your poison" and stop complaining!

    I also feel it is a money game. Those pharma companies who came up with the gold standard drugs do not want a new drug coming to town, taking away the money they make on these unsatisfactory drugs is not an option for them!

    I understand the pharma mind set and I don't blame them, having worked 7 years in research labs for a major pharma company, I am well aware of the time & money spent on research and getting the FDA to approve a drug is an uphill battle.

    But, I feel no one cares enough to find an effective drug to prevent recurrence and metastasis that doesn't come with so many severe SE's!

    I still take Letrozole, but I hate it and the way it makes me feel. It definitely lessens one's quality of life.

  • desdemona
    desdemona Member Posts: 10

    To — mavericksmom — I've been meaning to tell you this — In my humble opinion it is down right criminal that the doc / hospital did not allow you to have a bilateral mastectomy when you wanted one. And that was in 2018? I had my bi-lateral mastectomy in 2014 — and was almost afraid to ask but my surgeon said it would it get approved. A co-worker, in the 1980s, came up with breast cancer and was not allowed to have a bilateral mastectomy. She fought and fought and fought for years and she tracked me down to tell me that she was finally getting the other breast removed.

  • mavericksmom
    mavericksmom Member Posts: 997

    Desdemona, thank you!

    I was in total shock with my second Dx. I decided to skip the local hospital which had been having trouble keeping a breast surgeon, and who had just hired a new one, but he wasn't established in his new office yet. I decided to go to a well-known, well respected, cancer hospital in Philadelphia.

    I was assigned a female BS and I saw her PA for my initial visit and the set up for biopsy. When my biopsy results came back, a full 8 days from when I had it done, it was ILC. That was the first week in December of 2018. I was told to make an appointment with the breast surgeon, but when I called, due to the holidays, the female BS I was assigned to was booked until the very end of the month. I didn't want to wait, and they told me that a male BS had an opening two days later. The woman on the phone said he was very good, but really, what else would they say? So, I took the early appointment with the male doctor. That was my first mistake!

    The breast surgeon was an older man, and very nice, but he lied to me! He said, in front of my husband, that it was the HOSPITAL's POLICY never to remove a healthy breast! He said I could get a second opinion and gave some names of other breast surgeons at the same hospital. I was too distraught to get a second opinion and I didn't see the point, since they all worked out of the same hospital. That was my second mistake!

    I was haunted by the fact that I was denied a bilateral mastectomy especially since I had DIEP reconstruction which can only be done once, for years after my single mastectomy in 2019.

    I stayed on Letrozole for 6 months, then quit, but I kept my follow up appointments which were done by the PA. I actually liked the PA's but they kept changing and I got tired of going over my history with someone new every time I had a follow up visit.

    I finally came to grips with the fact that I had been denied the bilateral mastectomy. I reasoned my BS was right, and since it was almost 16 years between my first Dx and second, that I had seen the last of breast cancer. That didn't even last four years!

    I was due for a follow up visit at the end of May, 2022. I hated going to Philly each time, so I had all my records transferred back to my local hospital. By now their latest BS has passed the 3 year mark and I felt confident he would stay. I made a follow up appointment with him in July 2022. I liked him, and he gave me a script for a mammogram for my one "real" breast.

    That is when I received a BIRADS 4 mammogram result which lead to another biopsy and the third Dx. I wrote via snail mail, to the Philadelphia hospital where I had my first mastectomy, explained that I no longer had a healthy breast and to please reconsider their policy on mastectomies. After numerous letters from them, all via certified mail, they told me that it was NEVER their policy no to remove a healthy breast!

    I am sure they thought I was going to sue them. The doctor who denied me a bilateral mastectomy went on to be the Dean of their medical school within a year after my single mastectomy. Sadly he passed away suddenly in 2021. I was angry, but I never considered contacting a lawyer.

    I have no choice but to accept the way things worked out for me. If I could go back and do it over again, I absolutely would, however, that isn't how life works. I am now trying very hard to put breast cancer behind me, but I will always feel it will rear its ugly head again, I just don't know when.

    Lesson for all who find themselves in a similar situation, get a bilateral mastectomy! Looking back, I truly believe there is NO reason to leave a "healthy" breast behind once a mastectomy is recommended for one breast!

  • desdemona
    desdemona Member Posts: 10

    Yeah, mavericksmom, I do feel your pain — I never expected to deal with BC again either. But I only took AIs for about 4 years. When I had my mastectomies, I questioned everyone at length about sentinel nodes — but was assured the blue dye would ID any nodes that needed to come out. Well, now the documentation says there could be up a 20% failure rate. Anyway, the science is still evolving and maybe women in the future will survive longer and with good lives without so many bad side effects. One can only hope, right?

  • taragervaise
    taragervaise Member Posts: 5

    I was on Arimidex for 1.5 years and Tamoxifen for 3.5 years. June 2023 marked my 5 years. I'm 54 years old and was on BC pills for 30+ years. Was going through super stressful divorce at time of diagnosis. I believe one of thosethings caused it. ER* HER2- Oncologist told me she wants me to do at least 2 more years on Tamoxifen and I'm struggling with this!!! I thought I was done. I have so much hair loss and hot flashes are so bad that my husband can barely touch me. I think I'm done, just don't want to regret this decision later. If anyone has advice, I'd love to hear from you.

  • thrownforaloop
    thrownforaloop Member Posts: 5

    I was 42 at diagnosis of DCIS in 2022. Made it about 6 weeks on Tamoxifen, but it made me wish I was dead. Pressured to try again at the 6 month check up, made it about 2 weeks the second attempt but stopped when the brain fog and insomnia turned me into a shadow person. All the MO would do for me was prescribe ambian, which came with its own SEs. I'm finally feeling back to my old; I will probably get BC again at some point in my life, but at least the time between now and then will be enjoyable. My mom struggled through 5 years of letrozole only to get diagnosed with a second cancer in the contralateral breast…I just cant spend years suffering with a medication that only 'maybe?' will help me.

  • vixielyn
    vixielyn Member Posts: 4

    DanielleJS I hope you’re still in this thread! I wish to follow your progress! When I received my diagnosis 11/22, I was resolved to having a bilateral mastectomy. Doc assured ILC was contained in one quadrant and lumpectomy would suffice single 2mm (“why go through unnecessary suffering”). Imaging for ILC SUCKS. Even MRIs underestimate the size. Turned out all four quadrants over 10cm. Only 1 node positive for MICROmets. 6 nodes removed, back in for mastectomy a week later (my original reconstruction date). I’ve decided, even prior to reading your post, to follow your same coarse. Other breast mastectomy scheduled for 11/22/23 and waiting to get scheduled for BSO (total hysterectomy). I’m starting with 10mg Tamoxifen even though my MO insists on 20. What good is 20 if I cannot stick with it anyway? If I can handle that, I’ll consider the 20. AGREE, it’s about QoL.