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Recurrence risk discussion with my oncologist made no sense

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Hi all. I saw my oncologist today, and we were talking about my recurrence risk. I recently started taking tamoxifen, and it's not clear yet whether I can tolerate it. According to my Oncotype test, I have about a 5% risk of distant recurrence during the 10 years after my diagnosis. If I can't tolerate the tamoxifen, she said it'll be 10%. I wanted to know what my 20-year or even lifetime risk of recurrence risk is if I can't tolerate tamoxifen because I read an article saying that the recurrence risk doesn't really decline from year 10 to 20. She said the article is correct, but nonetheless, my recurrence risk without tamoxifen over 20 years is still 10%. I thought it would be higher than 10%?? I'm confused! Can anyone here explain this to me? I was going to PM Beesie but thought I'd put this on the board so others could read it, too.


I didn't want to keep pressing my oncologist for an explanation because I felt a little embarrassed for not understanding the math.

Comments

  • moth
    moth Member Posts: 3,293
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    Have you tried using Predict to see what the difference is between with and without tamoxifen? https://breast.predict.nhs.uk/tool


  • orangeflower
    orangeflower Member Posts: 95
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    Thanks moth. The Predict tool is helpful but it looks like it's only showing the chance of survival, not the chance of distant recurrence. People can live for years after a distant recurrence, so the rate of distant recurrence would be higher than the survival rates the Predict tool is showing. It's also not taking into account Oncotype score.

  • moth
    moth Member Posts: 3,293
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    I do think to an extent survival is a surrogate for recurrence since metastatic recurrence is fatal. Median stage 4 survival is 3 yrs. I mean yes, it's not capturing the true number because of lag from dx to death but I'm not sure we have anything better.

    Our data collection is poor anyway. For example, those of us who progress to stage 4 are not counted, only de novo cases are...

    There is a calculator to determine benefit of doing hormonal past 5 yrs but that again is not what you're asking.

    Hopefully Beesie can shed some light here :)

  • orangeflower
    orangeflower Member Posts: 95
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    That's a good point moth.

    I agree, the data collection is poor. My oncologist also admitted that they just don't know whether 10mg of tamoxifen is as good as 20mg. Seems like an important thing to figure out!

  • beesie.is.out-of-office
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    Okay, this is going to be a complicated two part answer.

    Part 1:

    If according to your Oncotype test, your risk of metastatic recurrence at 10 years is 5% assuming you take Tamoxifen, this means your risk at 10 years if you don't take Tamoxifen will be ~7.5%. This is because according to various studies, Tamox. reduces the risk of distant recurrence by about 1/3rd. 5% (your risk if you take Tamox.) represents a 1/3rd reduction off 7.5%.

    - Lots of MOs round this up to a 50% reduction, which would be the 10% figure your MO gave you, but if you look at either PREDICT or CancerMath, you'll see that their estimates of the risk reduction benefit of anti-hormone therapy is 1/3rd. (Note that Tamox. does reduce the risk of a localized recurrence by approx. 50% but that's a different risk and not what the Oncotype test measures).

    Part 2:

    According to this study I found, for those who have ER+ / HER2- cancers, 50% of metastatic recurrences happen during the first 66 (well, 65.95) months after diagnosis, and 50% happen between 66 months and 250 months.

    This chart has a lot on it, because the study was comparing recurrence patterns across different types of breast cancer. Focus on the dark blue line, which represents ER+ / HER2-. I have added lines to highlight the percent of recurrences that have occurred by 5 years, 10 years and 20 years.

    - The red line marks off 5 years, by which time approx. 45% of all recurrences will have happened.

    - The blue line marks off 10 years, by which time approx. 80% of all recurrences will have happened.

    - The purple line marks off 20 years, by which time approx. 97% of all recurrences will have happened.

    image

    Source: https://wjso.biomedcentral.com/articles/10.1186/s12957-016-0988-0


    So if your cumulative metastatic recurrence risk without Tamoxifen is 7.5% at 10 years, this means that at 20 years, your cumulative risk will be 9.1%. This assumes that the 7.5% represents 80% of your total risk and the 9.1% represents 97% of your total risk.

    Your MO's figures come pretty close to this calculation at 20 years, but because she is over-estimating the metastatic risk reduction benefit of Tamoxifen, she is over-estimating your risk at 10 years.

    How does this compare to PREDICT?

  • orangeflower
    orangeflower Member Posts: 95
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    Thanks Beesie! You are really good at this. The Predict tool says that with my stats, not considering the Oncotype score, taking tamoxifen for 5 years would result in one fewer death out of 100 at the 15 year mark. It says the same thing at the 10 year mark.

    (Edit, 6/29/21: I figured out that I entered in my tumor size incorrectly in Predict when I wrote this post. Oops. I just entered it correctly, and it says that taking tamoxifen would result in two fewer deaths at the 10 year mark and three fewer at the 15 year mark.)

    P.s., my 5% risk is an average - The Oncotype result said my metastatic recurrence risk was anywhere between 3% and 8% (I think) over the first 9 years, so they average it and say 5%.

    It's all so crazy, because I've seen three different oncologists, and they told me three different things. The first one was probably trying to scare me into taking the medications. He said that if I took the meds, the cancer almost certainly wouldn't return, but if I didn't take them, my risk of distant recurrence was at least 25%. I fired him. The Sloan Kettering doctor told me not to put too much stock in the Oncotype result and that my risk with tamoxifen was probably 10% at the 15 year mark and 14% without tamoxifen. My current doctor is the one saying that my risk is about 5% with tamoxifen and 10% without, at the 15 year mark. I don't know what to think because I just read that loneliness increases recurrence risk by 43%....Well, I'm a lonely person, so what does that mean for my personal risk? Alcohol affects the risk, too. I decided not to drink at all anymore, but before breast cancer, I drank off and on for years. Exercise and diet affect risk, too. And so on and so on...!



  • mountainmia
    mountainmia Member Posts: 857
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    Here's the thing: there are things you can do to reduce your risk, like taking your medications and taking good care of yourself otherwise, both physically and mentally/emotionally. Don't gain weight, don't smoke, don't drink much, get plenty of exercise. And if you're lonely, see if you can develop some meaningful relationships. But you don't get to control the whole thing, and ultimately, either you do or don't have a recurrence. All the stats in the world don't change that. So don't get too hung up on what one doctor (from their education, experience, and study) tell you vs what another one tells you. Yes, it's crazy; no, it's not surprising.


  • beesie.is.out-of-office
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    orangeflower, the three different opinions you received from MOs shows how imprecise this all is. No one should be fixated on their percent recurrence risk because it's never more than an estimate. I think understanding the range of one's risk is helpful in terms of deciding on treatment, but whether your actual cumulative risk at 15 years is 10% or 14% is just a guess.

    I do agree with you that the first MO you spoke to sounds like he was trying to scare you into taking the meds. That is irresponsible and unprofessional. What he told you about your risk is impossible; there is no way that anti-hormone could reduce a 25% recurrence risk down to virtually nothing. It's scary that MOs like that are out there.

    Your second MO from Sloan Kettering sounds similar to my MO, in that he seems to be basing what he says on his experience rather than firmly believing the results from a test. He's right about the Oncotype test from the standpoint that the recurrence figures that are associated with every score are based on an "average" patient, and none of us exactly match that average. The average tumor size within the TAILORx study, which is the study on which the recurrence rates are based, was 1.75cm. If someone has a tumor that is smaller or larger, that will affect their recurrence risk. The average grade of a tumor within TAILORx was grade 2; those who have grade 1 or grade 3 tumors won't have the exact same recurrence risk as those with grade 2 tumors. Age is another factor. You are quite young, which is an independent factor associated with increased risk, and which gives you more years in which a recurrence could develop. I think that this MO has reflected your age in his assessment. There is actually a computer model available to MOs from Genomic Health, the Oncotype company, that takes your Oncotype score and adjusts your recurrence risk estimate based on your age, the tumor size, the tumor grade, and whether you will be taking an AI or Tamoxifen. It's called the Oncotype RSPC model (Recurrence Score Pathology Clinical). This MO might not have run the computer model, but it sounds as though he is doing a similar assessment based on his experience and knowledge - providing you with a risk figure based on all the different factors associated with you and your diagnosis.

    As for diet and exercise and lifestyle factors, the way I think about it is that from my diagnosis and based on my treatment, I face whatever risk I face. Then there are things that I can do that either increase that risk or decrease that risk. So I try to eat an overall healthy diet (although I'm a believer in moderation rather than elimination and I don't believe in depriving myself of things I enjoy - I still have that glass of wine when I want it but I don't over-consume, same with chocolate, etc.), I try to exercise daily (next up today is getting out for a long walk), I manage my weight, etc.. I'm pretty sure I'm not doing anything that will increase my risk, and maybe I'm helping lower it just a bit. As for loneliness, I've never heard that this increases recurrence risk. But I can see where that could create stress and unhappiness, and that's not good for anyone's health. So my question to you is whether you are happy being alone or whether you are unhappy. I would think that if you like being alone (I do, lots of people do), then I doubt that this would cause any health issues. But if you are unhappy being alone, then think about what you can do to establish some new relationships.

    In the end, you had a favorable diagnosis and you have an excellent prognosis. Taking Tamoxifen will reduce your risk, although given that your risk isn't overly high to begin with, the benefit you get is relatively small. Still any reduction in risk is good. At this point you haven't determined if you can tolerate Tamoxifen. So stay on it longer and see how it goes. Hopefully your body adjusts and you find it manageable. And if not, then you can consider the impact to your health of taking Tamoxifen versus the small amount of extra risk you face if you don't take it, and you can decide from there.


  • orangeflower
    orangeflower Member Posts: 95
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    Hi there. Thank you for your thoughtful response. It's funny you should mention the RSPC model because my oncologist showed it to me for the first time yesterday. She said it was new and they just got it. The RSPC model came up with the 5% figure.

    My breast surgeon was the first one who told me that having a good support network increased survival. Here's the article I found:

    https://www.webmd.com/breast-cancer/news/20161212/...

    My social support network is not great. I'm unmarried, have no kids, and live alone. I've got a handful of friends, and only a couple of them live nearby. I've struggled with lifelong severe depression, and it caused a lot of isolation. Trying to create new contacts is hard in your 40s, and during a socially distanced era. I hope things get better once more people get the vaccine.

    Anyway, my life is pretty painful to begin with, and I'm having to decide whether it makes sense in my situation to reduce my quality of life further with endocrine therapy. I did six months of Lupron plus Aromasin, and that was not a barrel of laughs, let me tell you. I'm on 10mg of tamoxifen right now and will increase to the 20mg in two weeks. So far I've been having major fatigue, some cognitive problems, and more depression, but I don't know how much of that is tamoxifen and how much is PMS and having to stop taking my Wellbutrin.

    I like your attitude, Beesie!

  • Beclyn20
    Beclyn20 Member Posts: 18
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    Thanks Moth! I declined Tomoxifen and that chart you shared says the benefit of taking it was only 0.8% (0.5% – 1.0%). Holy smokes. Seems now like a really good decision. The MO made it seem like 50 percent. Happy New Year to you all!

  • beesie.is.out-of-office
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    Beclyn, your MO might not have been wrong when he said that the benefit of Tamoxifen would be 50%. It depends on what he was talking about.

    You had a lumpectomy. So for you, Tamoxifen offers up 3 benefits:
    1. It reduces your risk of a metastatic recurrence
    2. It reduces your risk of a localized (in the breast area) recurrence
    3. It reduces your risk to develop a new primary breast cancer in either breast.

    .

    There are also two ways to look at risk reduction, and both are needed to figure out how much benefit you will get from Tamoxifen. There is relative risk reduction and absolute risk reduction.

    The 0.8% benefit that PREDICT indicated for you is specific to the first risk only, your risk of metastatic recurrence. 0.8% is your absolute risk reduction. And here's how it would have been calculated. As I mentioned in an earlier post to orangeflower, Tamoxifen reduces metastatic recurrence risk by approx. 1/3, i.e. about 33%. That is the relative risk reduction. So based on your inputs, the PREDICT model would have estimated your risk of recurrence, with no additional treatment, to be 2.5%. Then, if you were to take Tamoxifen, it would reduce your risk by 33%, bringing it down to 1.7%. And that is the 0.8% absolute benefit.

    PREDICT does not look at localized recurrence risk or the risk that a new cancer might develop. For both of these separate risks that you (and all of us) face, Tamoxifen can reduce the risk by 50%. There is your MO's 50%. I have no idea what your risk of a localized recurrence might be - it depends on the diagnosis, size of tumor, surgical margins, etc.. On average after a lumpectomy with rads, I believe the risk is something like 12%. If your risk was the same as average, 12%, then Tamoxifen would be able to reduce the risk by 50%, taking your risk down to 6%.

    As for your risk of a new primary, here again this is personalized based on your age at time of first diagnosis, family history of breast cancer and various other things. What my MO told me when I was diagnosed at age 49 was that my risk to be diagnosed again, at some point in my life, was about double that of the average woman my age. I've read studies that seem to support that. So for me, that meant my risk to develop a new breast cancer was about 22%. Tamoxifen cuts this risk by 50% (some studies suggest an even greater benefit). That would be an 11% benefit except for one thing - our risk to be diagnosed again spans the rest of our lifetime; for someone aged 49, as I was, hopefully that runs another 40 years. 5 or even 10 years of Tamoxifen won't provide a risk reduction benefit over 40 years, but it will reduce the new cancer risk by 50% during the years you take the drug, and there is an extended but reduced benefit for many years afterwards. So starting with a 22% risk, using my own example, Tamoxifen would provide an absolute risk reduction benefit of around 5%.

    Sorry for the long explanation but many people read this site without posting and I think clarifying something like this is important.

    orangeflower, the same 3 benefits accrue to you with Tamoxifen, although the difference for you is that because you had a BMX, your risk of a localized recurrence is probably only 1%-2%, and your risk to develop a new primary breast cancer is also about 1%-2%. Therefore a 50% risk reduction against each of these risks at most provides you with a 1% absolute risk reduction benefit for each risk, as compared to the greater benefits for those who've had a lumpectomy. So for you, it is that first benefit of Tamoxifen, the reduction in metastatic risk, as reflected by the Oncotype score and the PREDICT model, that is most significant.


    Hope that all makes sense!

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Broadly speaking, around 30% of all early stage breast cancers will come back as metastatic one day. That might be another way of looking at it, that could be helpful to you, in addition to the more specific 5 to 10 year grade/stage/Oncotype model. My advice is to give Tamoxifen a chance!

    When I took Tamoxifen I felt a bit crappy for the first 6-8 weeks, but after an initial adjustment period I actually felt perfectly fine on it. My oncology NP said she often sees the same thing in other patients. I recurred anyway, even though I took my hormone medicine, so there are no guarantees with this disease. In the end we all must make the best decision we can based on quality of life and and how we feel, and live with the consequences. Best wishes to you.

  • Beclyn20
    Beclyn20 Member Posts: 18
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    Thanks Beesie! I will have to re-read that to fully absorb. I still stand by my decision even if it was 50%. When I was making my decision I was reading about women on hormone blockers (not on this board) so depressed they were writing suicide notes to family. My coworker was on AIs and had to take 6 Aleve to get out of bed in the morning because joint pain was so bad. My Gyno wanted me to get my uterus scanned to check for cancer every 3 months. The whole thing creeped me out. Not to mention the 4 page consent form they wanted me to sign for a drug that was going to save my life. There are NO guarantees either way so I decided to go with my gut. No regrets! Happy New Year to you!

  • beesie.is.out-of-office
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    Beclyn, I was in no way challenging your decision, but was simply saying that there is more benefit from Tamoxifen (and the AIs) than just the reduction in metastatic risk. And I was explaining the difference between absolute risk and relative risk.

    In the same vein, I will also say that side effects vary hugely by individual, so for those who will get a meaningful absolute risk reduction benefit from these meds, I would always suggest that they try it to see how their body reacts. I'm on an AI and other than hair thinning (which I think I now have under control), at this point I have virtually no side effects. A few months in it did look like I might be starting to develop side effects, but those eased off quickly and so far haven't returned.

    buttonsmachine, the 30% stat is outdated. There is a very long discussion thread about that stat on this board - I won't provide the link because the subject line, which mentions the 30% stat, is scary to many who read and who don't bother to go through the pages & pages of posts to understand how misleading that stat is. I wish that thread would be buried in the archives and never return. The fact is that even when the 30% stat was valid, as it probably was back when I was diagnosed 15 years ago, it was important to understand that it was an average that combined the risks of every person diagnosed with Stage IA to Stage IIIA breast cancer. Obviously, the risk will be very different for someone with a non-aggressive Stage IA diagnosis versus someone with an aggressive Stage IIIA diagnosis. The 30% stat blends together these people, along with everyone with every diagnosis in-between. Models like PREDICT and CancerMath, which take into account one's age and diagnosis, are much more accurate for the individual. Tests like the Oncotype test, which assesses the genetic make-up the cancer cells, are even more accurate. The reason that I often post about the Oncotype RSPC model is because it combines the patient's age and pathology along with the genetics of the cancer, so I think it's the best of the lot. That said, even these models just provide averages and estimates. None of them can predict what will happen with any one individual. Someone who is assessed to have an extremely low risk of recurrence - only 1%, let's say - might still have a recurrence. They could be the unlikely 1 in 100 who recurs. And someone who is assessed to have an extremely high risk of recurrence - 75%, let's say - might never recurrence. They could be one of the 25 out of 100 who doesn't recur.

    From my perspective, whether or not to take meds like Tamoxifen and the AIs should be based on a personalized risk vs. benefit assessment. All treatments, including these meds, come with risks. With Tamox. and the AIs, there is a very low risk of serious side effects (which could be more significant for those with other health issues) and a higher risk of quality-of-life side effects. These risks need to be balanced against the benefit that one will receive from these meds. That benefit is different for each of us, based on our diagnosis, our age, and the type of surgery we had, as I wrote a bit about in my earlier post to Beclyn. For some people, just the risk of serious side effects alone from these meds outweighs the breast cancer risk reduction benefit that they'll get - this is why Tamox/AIs are usually not recommended for those who've had a BMX for DCIS or DCIS-Mi. For most people with invasive breast cancer, the decision comes down to the issue of QOL side effects. For that, I agree completely that it makes sense to try Tamox or an AI for a while to see what side effects you have. As I see it, deciding to not take these meds because of other peoples' experience is to short-change yourself.

  • Beclyn20
    Beclyn20 Member Posts: 18
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    Bessie. I did not feel challenged. :) I knew the decision I made was the right one for me. That being said, I work at a hospital and I have a first hand view of patients and outcomes. I know life is a crap shoot. For myself, I did want to put my trust in a medication for some sort of security while getting constant scans of my uterus to check for cancer. I can barely make time to get my haircut. LOL. Thanks for all the valuable information.

  • mg15
    mg15 Member Posts: 3
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    All I know is that I have a 10% for distant tumors.

    I am on Arimidex now. This is the third time and I had

    taken Tamoxifen etc.

    You might ask her about it after your own investigation.

    mg

  • flashlight
    flashlight Member Posts: 311
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    Hi Beclyn20, I understand why you don't want to take Tamoxifen. I was afraid to take it and didn't want to, but my daughters wanted me to try. My MO told me that it was a normal side effect to have uterine thickening and that they don't recommend frequent transvaginal ultrasounds unless you are having abnormal bleeding. Many women who haven't gone through menopause don't have any issues with this. I went to my Gyn and had a baseline done because it had been many years since my last one and I had a history of fibroids. I am postmenopausal and these would be done yearly. If you haven't had a baseline done you should get one regardless if you start Tamoxifen or not. I continue taking Tamoxifen and have been working through many of the side effects and doing well. Good luck to you.

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Beesie, I understand that the 30% statistic represents combined risk and not individual risk. I still think it can be a useful way of thinking about things - not the only way, but a way. In any case, my intent was not to scare anyone with the 30% statistic, although I personally don't find that number to be unrealistic when estimating lifetime metastatic recurrence risk. Not five or ten year recurrence risk, but lifetime recurrence risk.

    You may find this article interesting. It was published just a couple months ago. It talks about just that, and states right in the background section that between 20% and 30% of early stage breast cancer patients still die of metastatic disease. However, treatments are improving, and people are living longer, and that is good! But as you will find in the article, there is still a lot we do not know about metastatic recurrence.

    The Lingering Mysteries of Metastatic Recurrence in Breast Cancer

  • beesie.is.out-of-office
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    buttonsmachine, thanks for that link. I just skimmed it but will dig into it more later; it's an interesting article.

    That said, Winking

    "and states right in the background section that between 20% and 30% of early stage breast cancer patients still die of metastatic disease."

    I suspect that the 20% figure is probably fairly accurate, if not low - but 20% is 33% less than 30%, which to me is a huge difference. Based on the number of people diagnosed every year with early stage breast cancer in North America, over 10 years the difference between 20% and 30% would be an additional 250,000 people who survive and never develop mets. And note that while the article is recent, the sources for the "between 20% and 30%" stat are from 2000 and 2005, which means that current treatments are not reflected in these figures.

    Yeah, what can I say, that 30% stat drives me crazy! Loopy

  • Westmar
    Westmar Member Posts: 10
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    Bessie, you have a wealth of info that I wish I could process. I was on a radiation thread for support and info. (11 done with 8 more to go). I need to have an Ativan to get through each treatment, because I can't stop crying. Now, my stress level has gone through the roof since reading about Hormone Therapy. I really don't think I can handle any/all the side effects. I am scheduled to see my MO in 2 weeks and not even sure if I will go. You see, on Dec 1, 2020, my only child passed. Suicide. He was only 23 and leaves behind a 3 yr. old son. 💔. As far as my odds are, I don't even care. I do, however care that what life I have now, which is misery and grief doesn't get worse. I don't want any more hospitals or Dr appts. I think I need a good (permanent) grief therapist. I live alone, and that certainly doesn't help. Any advwould be appreciated.

  • orangeflower
    orangeflower Member Posts: 95
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    Hi Westmar. I'm so sorry to hear about your son and your health problems. I lost a family member in the middle of my breast cancer treatment, too, and I also live alone. It's very very difficult. I can't imagine how hard it must be for you given that the death was a suicide. My heart goes out to you completely.

    I wanted to respond to your concern about hormone treatment. It's important to remember that not everyone has difficulty with the meds. You may try it and find it's not that hard for you. You won't know unless you try.

    Hugs,

    orangeflower

  • Westmar
    Westmar Member Posts: 10
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    Orangeflower,thank you. Hugs to you too. I have been reading a lot and while it seems to be 50/50 odds of not getting or getting alot of SE’s. My problem is I have so many issues already. Even prior to my diagnosis and my son’s death, I always had trouble sleeping, prone to anxiety, panic attacks, depression, post menopausal weight gain. I have tried many anti-depressant in my life and don’t tolerate them well. I have a low tolerance to any drug intake. So, I think even my MO will scratch his head on this one. Maybe if I take 3-6 months off everything, I might be stronger down the road?)

  • orangeflower
    orangeflower Member Posts: 95
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    That could very well be. Maybe at least talk to the onc about it and make a decision afterwards.

  • rah2464
    rah2464 Member Posts: 1,192
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    Westmar God bless you. I am so very very sorry for the loss of your son. And I am sorry you are also having to deal with cancer treatment. Can you have a frank discussion with your MO to request treatment with a therapist that also is practiced in treating cancer patients? While anti hormonals can be difficult for some, they are not for everyone. However given your situation I think a very careful evaluation is warranted. You need to clearly understand your recurrence risks and weigh those against your emotional health. I hope you get good guidance and support from your medical professionals. If you do not, ask around so you get the assistance you need.

  • abigailj
    abigailj Member Posts: 101
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    Hi Westmar - My deepest sympathy to you, I have no children myself but cannot imagine the pain you are in from the loss of your child and hope having your grandchild gives you some comfort. I also echo the advice of the others to give the AIs a try. Full disclosure- I tried them and opted not to continue as my SEs were bad, I was 62 and already had menopause get worse from discontinuing HRT at diagnosis and although cancers were hormone positive my MO told me 3% recurrence reduction if you take them, 6% if you don’t. Everyone is going to react to the AIs differently and I think everyone with hormone positive cancer owes it to herself to at least have an in-depth discussion with the MO and give it a try if it will give you good odds reduction for recurrence. I hope you will consider exploring the options with your MO.

    Gentle hugs,

    Abigail


  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Westmar, I'm so sorry to hear of your loss. I lost a family member to suicide in 2019 and I still can't really understand it, if that makes sense.

    Under the circumstances, I understand your concerns regarding hormone medications. I think you should definitely discuss with your MO and ask for help. Sometimes hormone medications can mess with your emotions, it's true, but sometimes they don't really have any side effects at all.

    I've had very different experiences on Tamoxifen vs. AIs vs. Faslodex. Every class of drug is quite different, in my experience. And every person is different too, so you might respond differently than others here. You may want to give it a try for a while, and see how you feel. Best wishes whatever you decide.

  • beesie.is.out-of-office
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    Westmar, I am so sorry for your loss. I wish there was something I could say or do to ease your pain, but I know that's not possible.

    About hormone therapy, I think a very big consideration is the fact that your diagnosis is DCIS. For those with invasive cancer, the most compelling argument in favor of hormone therapy is that it reduces the risk of a metastatic / distant recurrence (i.e. becoming Stage IV). But DCIS is non-invasive, so this means your risk of a metastatic recurrence is virtually nil. So hormone therapy isn't necessary for that.

    Where you would get benefit from hormone therapy is in reducing your risk of a localized (in the breast) recurrence. However with a relatively small grade 2 DCIS, and since you've had radiation, if you had good surgical margins, your risk might already be quite low. This is something to discuss with your MO.

    The other benefit you'll get from hormone therapy is some protection against the development of a new breast cancer, in either breast, in the future. Once any of us have been diagnosed one time, we are higher risk to be diagnosed a second time, with a new primary breast (i.e. not a recurrence of the current DCIS but a totally separate breast cancer). Hormone therapy can cut this risk in half. But used this way as a preventative, hormone therapy is certainly optional, and it's something you can decide to do in the future rather than start now.

    If your signature line is correct and your diagnosis was pure DCIS, Stage 0, your situation is different than others posting here. That's not to say that hormone therapy won't be recommended by your MO or that it isn't worth trying, but with virtually no metastatic risk from your current DCIS diagnosis, the risk in not taking hormone therapy is very different than what others with invasive breast cancer may face. It's certainly worth a discussion with your MO.


  • Westmar
    Westmar Member Posts: 10
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    Bitter sweet day yesterday as I rang the bell and finished my last treatment. I’ve decided to take a month off for breathing/healing time. I find myself getting more depressed and isolating myself more. People just keep upsetting me. I will meet with MO next month and maybe he will convince me to try HT. Thanks for all your thoughtful responses 💕 I will pop in after my meeting and let you all know how it works out.