Aromatase Inhibitor and just walking away.

marijen

Bosum Blues, at page 294 of the Femara topic there was a discussion about the calculators. I am really not that good at understanding the calculators Lifemath and Predict, but I wouldn't count on them myself because I have or had an occult primary. When I am looking for things I find information that others here might be interested in and it doesn't mean that I am in agreement. Such as counting on these calculators. I think I posted that artivle here because the recurrance problem was not addressed. I really don't know now as my memory has taken a dive recently. I'm hoping it will come back. Anyways there were a lot of good posts about the side effects of AIs, you were there too. Another topic you might like is

Topic: Tamoxifen often causes insomnia/depression. Did they warn you?

Or Survival Statistics

snowbird1943

I am new to this forum. There are so many young women struggling with this. I, on the other hand am 74 and I could not understand why more people my age did not post. My daughter suggested that perhaps most women my age may not be into computers. I was diagnosed about a year ago and have completed the 6 months of chemo and 5 weeks of radiation. I suffered from Neuropathy from the chemo and it has not shown signs of improving yet. I have heard it can take months to years to go away if at all. I am on my 3rd hormone blocker and Arimidex is the lesser of all evils but it is not great. I am having trouble sleeping, have trigger finger, joint pain and just not a lot of energy. I took it upon myself to take it every OTHER day and wondered if anyone else tried doing this. I would love to stop it altogether but feel I am at a higher risk of it returning as I had a lumpectomy and was Stage 3 with 4 out of 5 lymph nodes involved and ER positive. I have had an MRI and body scans and there appears to no cancer cells evident at this point.

I had a mammogram 7 months before I was diagnosed and they found nothing! It was pain that took me to the Doctor which I understand is rare too, so perhaps God isn't finished with me yet! Did any one else ever have this happen with a Mammogram not finding the cancer. I had Lobular Cancer, so perhaps that is part of the problem.

Please be patient with me as I am not familiar with all the terminology and recently became a great grandma! Love to hear from any other grannies out there and thoughts and prayers go out to all you young folk that are dealing with such a huge battle.

MarilynIllinois

Hi snowbird1943, I'm 68, so I'm closer to your age!

Me too, my mammograms have been clear for 25 years. An MRI identified a suspicious area and 2 MRI guided biopsies found Pleomorphic LCIS.

I was prescribed Anastrozole but only took it for 2 weeks since I developed a cough. I decided to stop and maybe try again after surgery. I have not yet restarted taking it. Still recovering from my mastectomy.

Good luck to you!

snowbird1943

Marilyn Good luck in your recovery. Thanks for responding.

kira1234

Snowbird I'm 64 so a bit older. I also have lobular breast cancer. I've been diagnosed 2 times. I was on tamoxafin when I had my recurrence. I was put on Arimidex but was unable to take it. I've been on all the medications now. My oncologist has taken me off everything. I'm trying to lose weight and taking a variety of supplements.

Going through a hurricane has not been what I needed. Thank goodness no damage to my house but a week of driving and stress is the last thing I needed.

snowbird1943

Kira Totally understand the part about the Hurricane as we are Snowbirds and own a place in Florida. Sorry to hear you had a recurrence and hope all goes well with you now.

scaredashell07

what's the website to find your prognosis for recurrence and mets

Artista928

There is none really. They are more survival. What would really help if there was a way to figure one's chances for mets or recurrance but alas it's too complicated to just plug # in..

scaredashell07

thanks. Guess I'm looking for an answer. One I will never have. So frustrating and hard to live with this fear of it coming back. Every ache and pain I feel I imagine it's cancer. Two small kids don't help with the anxiety.

Artista928

Yeah, unfortunately all we can do is best guess for each one of our situations. So much unknowns. There is no magic do this or that. Just need to go with what you feel is best for you.

wabals

Snowbird I am also a snowbird and 74.

marijen

• Lack of estrogen, which allows bacteria that can cause UTIs to grow more easily in the vagina or urethra. Women who have gone through menopause are at increased risk for UTIs.

annieb4

I have decided I am going to gradually go off of everything. I have been taking Anastrozol and anti-depressants for the hot flashes for 4 years. I had asked what side effects I would get from the anti-depressants since I was only taking it for the hot flashes. Was told none but don't believe it. I have my 6 month apt in two weeks and will tell my onc that I am done. They don't know what we go thru with these side effects, they hear what we say, but they or anyone else will never really know how bad it sucks. So, I am ready to be my own person and do what I think is best for me. Is it scary, yes it is. But really how many women are taking this crap and their cancer comes back? There is no 100% that it won't, no calculator that can pinpoint what will happen. Hell, I could get run over by a car tomorrow, who knows..I am putting my life in my hands and God's and that will have to be good enough.

VioletKali

AnnieB4- I ultimately discontinued everything because I knew that I would be more angry and more negatively affected if I had everything and it recurred. That was more painful for me to imagine than living well, without joint pain and side effects, and then deciding what to do if/when it returns.

((hugs)) I understand.

marijen

Maybe we should all take placebos for treatment? No sides!

• Telegraph
• Science

Placebo effect works, even when you know you've been given a dummy pill.

SJI

Hi,

Before I saw my MO last week, I had made up my mind not to take anti-estrogen therapy. Now I sit here with an unopened bottle of Tamoxifen. I am so confused. He told me that the therapy only helps 10 out of 100 women but since they don't know who are the 10 they give it to everyone.

I asked about my risk of recurrence if I don't take the drug. He said it was 1 to 2 percent in the first five years and then 20 percent after that.

I'm working out 180 minutes a week, which reduces my risk of recurrence by 40 percent.

The drugs reduce the risk by about 50 percent.

So by my calculation, with the exercise I would have a 12 percent risk (in the later years when my risk is 20 percent).

The drugs would reduce that to 6 percent. That is if I am one of the 10 percent they work on.

I just don't know if it is even worth a try to see if I don't have side effects. I also wonder, if he says my risk of recurrence is only 1 to 2 percent for the next five years, why couldn't I wait until five years from now to start?

marijen

Have you studied all the negative posts and risks and topics associated with Tamoxifen? You can do that while trying it out. Sometimes the sides don't show up with anti-hormonals until after a year or two.

muska

Marijen, it would be helpful if you had your profile filled so that we understand your perspective better. Things like stage, treatment, age, comorbidities etc matter.

Based on your note above addressed to a woman who has just completed active treatment, needs protection for many years and is looking for support I don't understand why you keep bringing up potential negatives to someone who could probably get the most benefit from the drug. Just curious what drives this negativity.

Best to all.

To the poster who asked why start tamox now and not five years later: tamox deprives cancer from estrogen that it needs to grow. If you don't start now and wait for five years your cancer will continue to grow for those five years if it is so inclined. Five years later it might be too late (most recurrences occur in the first 2 years after completion of active treatment.)

ErenTo

marijen, I second what muska said. I brought this up in another thread a few days ago. I don't remember which one, because there are just so many that have been polluted with negative anti-hormone therapy posts by you and some others posters in Hormone Therapy branch. I repeat, this is unethical. Please refer to the body of evidence on AI and Tam and see how many lives have been saved over decades. You are, potentially, endangering lives with your negativity. BCO searches show up on top for breast cancer on google searches. I'm afraid way more people are being discouraged by these negative posts than those who only post here. I hope mods will do something about it.

marijen

I was just encouraging to do her own research. There are silver linings that come with cancer, I’ll agree. But please remember knowledge is power and/or The Truth Will Set You Free. We are doing no good service to the 257000 that have yet to be diagnosed in the next 12 months, if we hide from the information and not question it. Nothing will change. And the suffering will continue.

I had all my dx info posted until I realized all our posts show up on the Internet. We have the right to privacy.

---

Artista928

Marijen: Yes you have a right to privacy but not knowing your profile it isn't right to comment about what someone else is doing or not doing.

We are all looking at profiles to see who is closest to our own. Dispensing advice, most negative about meds without showing your own profile is simply not ethical. I've said this before and you responded to one of my posts with "just kidding" when I know you aren't. You really could be putting lives in danger by the scare tactic you use. If I recall correctly, you have some form that is unique, not something that is common. While posting all the negative stuff on meds, why not balance it with the positive studies??? You research study posts are one sided. Sorry if meds can't work for you. I bet if they did you wouldn't be filling threads with ALL negative studies on them. There's just as many positives for our ER+ people.

Let me add too that many more people are doing well on AIs/Tamoxifen than not... Most who are doing well are no longer on the boards because they are living their lives now.

marijen

Like I am the only one here that suggests others do their own research. I spend hours everyday reading and researching and sharing. What do you post Artista? Once again I suggested she read everything. Why are you here except to come after me? Why don’t you answer the lady’s question. No one else bothered. Why do you think she posted it at Walking away?

Artista928

Oh come on now. You aren't just posting for people to do their research. You fill threads with every negative study you can and say look! People can use a search function on the net to do research. By you posting NOTHING but negative stuff about meds is irresponsible and potentially life threatening to the newbies who of course are so scared to begin with,

Moderators

We encourage everyone to read credible, expert-reviewed information, and speak to their treatment team before making their decision on whether or not to take hormonal treatment. Sometimes a second medical opinion can also be helpful.

We have gathered many important links from our site on Hormonal therapy here:

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

Please take a look, and weigh the benefits and the risks carefully with your physician.

marijen

Artista,If you read my post I said she could take it and try it out while she resaerched it. You distorted the truth in your next to last post, Hapb got the joke, and apparently you didn't read SJI’s question. I would never advise to take a drug just because I said so. If you check all of my posts you won't find that.

ErenTo

Erento we all have the right to make our own decisions and you need to respect that too.

Yeah? And what does that have to do with anything I said? I don't respect scare-mongering, spreading false information and biased negativity. That's what I'm objecting to. I think in one of these threads marijen said that 40% of women on AI recur. Using out of context statements like this are dangerous and I repeat, unethical. This has nothing to do with being informed and clearly there is a bias. Not sure what the motive is, and frankly I don't care. For a while I thought we were being trolled, as lately these negative posts with an attempt to influence have been popping up every time some frightened newcomer asked a question.

ErenTo

Frightened newcomer is neither a judgement, nor an insult. Vast majority of us were, and some of us are, still frightened. And no, fright does not impair thinking. You can be frightened and yet a genius. I think you're missing the point I'm making, or haven't been paying attention to ad nauseam posts by some on BCO lately

And by the way, I did walk away from AI myself and have a lot to say on the subject. So I don't suggest people should just blindly follow doctor's instructions. But again, my point is completely missed. And I won't get into it further. Just repeat that what some people are doing here is unethical and leave it at that.

BarredOwl

I have no opinion on whether another person should or should not elect endocrine therapy, as personal risk tolerance is always a factor and each must come to a decision of what is right for them.

However, I don't really understand SJI's stats, and wonder if she may have misheard something: "He said it was 1 to 2 percent in the first five years and then 20 percent after that."

Here is the first graph from the sample Oncotype report online for a node-negative person with a Recurrence Score of 10 showing a 10-year Risk of Distant Recurrence of 7% (95% CI: 4% - 9%) with Tam Alone:

Reading off the graph of this node-negative report, a Recurrence Score of 11 would be associated with a 10-year Risk of Distant Recurrence of around 8% with Tam Alone (i.e, WITH Tamoxifen). (Please check the content of your report to be certain.)

(That is a 10-year distant recurrence risk, so there will be an additional risk of same in-breast recurrence (due to recurrent or new disease) and of contralateral new disease. Endocrine therapy can reduce these loco-regional risks as well, providing additional potential benefit.)

The above might tend to suggest that the referenced 1%-2% is not the total risk over the first five years, but is actually an annualized risk over the first 10 years and that it is the risk WITH TAMOXIFEN treatment (i.e., 1%-2% per year)?

The above graph showing the relationship between 10-year risk and Recurrence Score comes from Figure 4 of Paik (2004), a study of patients who were all assigned to receive 5-years of Tamoxifen. Therefore, the risk without treatment would be higher than 8%. (Some MOs suggest almost twice as high as shown in the report, but this should be confirmed with a Medical Oncologist.)

Perhaps clarification and/or a second opinion might be of value to confirm / clarify.

While reducing the risk of distant (metastatic) recurrence is usually the main rationale for endocrine therapy in those with invasive breast cancer, patients may wish to seek advice on various risks either (a) with endocrine therapy; or (b) without endocrine therapy (after all other treatments):

(1) distant metastatic recurrence risk with endocrine therapy;

(2) risk of same in-breast recurrent or new disease;

(3) risk of contralateral new disease.

If post-menopausal, another point of discussion would be the option of an Aromatase Inhibitor (AI), which may provide some advantage over Tamoxifen, particularly for those with ILC (see e.g., Filho (2015).

AIs also have a different side effect profiles (request information about these and incidence), and different drug-drug interaction profiles from Tamoxifen, and that may be another reason to consider them in some cases.

Best,

BarredOwl

_________

Edited to add: The second graph in the node-negative (N0) Oncotype report is used to gain some insight into the potential benefit of adding chemotherapy to endocrine therapy. All patients in that study received endocrine therapy: (a) 5 years of Tamoxifen alone; or (b) chemotherapy plus 5 years of Tamoxifen. Therefore, the Oncotype test "assumes" receipt of endocrine therapy in the sense that the report does not present information about the distant recurrence risk in those receiving no Tamoxifen. Patients should inquire with their MO per the above re their risks without Tam.

dtad

Hi everyone....as most of you know I refused anti hormone therapy from the start. There were several reasons but most important was already dealing with a debilitating autoimmune disease. I'm certainly not against it and think we all need to make our own informed decisions about treatment options. I respect and support all decisions made. I do however feel that we need to respect the title of the threads and post appropriately. This one was obviously started by someone who was ready to walk away from anti hormone therapy. There is also a thread for those who do well on it. This is a very complicated disease and IMO things would be clearer if we all posted in the appropriate thread. Good luck to all.

Artista928

dtad- By posting different views and experiences, it sparks a discussion, which is what all threads are about. OP posted and we all gave our experiences good/bad/ugly as people should be aware about all. But more importantly is the fear mongering that tends to pop up in such threads like this which is wrong. Post your experience, walk away, fine- I did. There is a fine line in this that we should all be aware of.