Opting out
Comments
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NotBroken, I was just referring to the board's rules. As far as I know, we can politely respond to all posts, except those in the Stage IV forum.
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Most do not do well. I believe the stats to be that 50% opt out for various reasons while others stay for other reasons.
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Icietta, I was on one alternative site that was shut down because it did not stay civil. I felt bad for those that wanted to learn and those who practiced.
OK, regardless, my decision on the blockers has been made a long time ago. It is up to others to decide, but I reiterate, no right and wrong decisions here and no good choices. Glad for those who do well but respect those who choose to opt out.
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Just because we CAN do something, does not mean that we SHOULD do something. When your motivation is to scare, guilt, or demean the treatment choice of somebody else, you are simply making somebody's struggle against breast cancer harder. Shame on you!
Posting that somebody may be " jealous" that you have chosen to live with the SE of anti-hormonal medication, or "jealous" that you don't experience SEs is laughable! We should treat each other better than this!!
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I'm losing track of who said what to whom. This forum does not nest responses under individual posts, so it's confusing. I recommend we state to whom we are responding.
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Pupmom,
My comments were not aimed at any one person, I believe they should be guiding principles for all of us. Seeing the way that somebody is treated any time they question taking an anti-hormonal truly makes me sad. I do not understand why some people have such a hard time supporting others who may make a different decision than they do. When the insults (such as "they are jealous of us" or "they don't care what they do to their family") start flying it has gone to far.
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Or to say," I don't understand why it is disturbing (frightening?) to learn about different opinions and experiences." No one is disturbed or frightened by your opinions. We just want to have a conversation about why we have opted out or are considering it.
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Peetie, please don’t twist my words. You (and others) have convinced me not to post on this subject any more. I will try to ignore people like the OP and swg when they say they won’t even try a drug that could stop them from recurring. I really was attempting to be helpful based on my experience, but I can see that every time someone suggests trying the hormonal first, people like you accuse us of bullying. I can only hope that they will listen to their oncologists.0
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Sorry, wrong thread.
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My experience is that AI drugs did a number on me and I quit after 4 years my mo had no problem with my decision. Yes I feel much older after taking them but I still have hope I can reverse some of the effects.
I think we should demand better treatment.
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Sara, I'm glad you are not disturbed or frightened. Sometimes the posts I read appear to express those emotions.
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Hi everyone...it all boils down to supporting and respecting each others decisions regardless of what they are! No judgement please. This is an opting out thread. Its just not true that most do well but I do not go to the doing well on anti hormone thread and post that!
Meow...I completely agree that we need to speak up for better treatment options. IMO the non compliance rate presently is just too high.
Good luck to all navigating this complicated disease.
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UNC is doing a clinical trial on "baby" aspirin and BC. I know because my MO, head of the BC dept, asked me about it. But I was already taking baby aspirin. After doing my own research! LOL I know -- my bad.
So there must be something, at least to the thought of it helping, for them to do a clinical trail. Idk. Just my 2 cents.
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About 6 years years ago, (before bc) I had a PCP who asked me (during the intake interview) why I was taking only 1 baby aspirin. I shrugged my shoulders. Then she said, "Do you want to die?" (she recommended 2.) I liked her a lot partly because she was very attentive and wrote her notes carefully by hand- never had her back to me. I didn't stay with her long because her staff was openly complaining about having to enter her notes into the computer and I figured I should find someone younger. (yes, guilty of age discrimination) I just recently got a letter from her announcing her retirement at the age of 96! I had no idea! Do you think it was the aspirin? .
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Sara that's a great story! Her secret could be the aspirin, but you do have to be careful with it. Stomach bleeding is a real risk. That said, I've been taking one for years with no problem.
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Thanks for the heads-up.
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I took baby aspirin for years but unfortunately DID have a bleed with pretty serious consequences. (You don't think it will happen to YOU, or to younger, healthy people - until it does
) If not for that, I'd definitely be on it and my MD's suggestion. As I've said elsewhere, make sure your MDs know that you're taking it (as with any drug or supplement).
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Hopeful, do you mind elaborating? I had a DVT/PE and was on Warfarin for a year. My Onc agreed to let me go off Warfarin only if I took a daily baby aspirin. Is anemia the main concern? Or ulcer?0
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Hi, Peregrine - Ongoing aspiring use can cause ulcers, intestinal bleeding (both of which can lead to anemia) and strokes as well (!)
If you've been treated for a DVT/PE I would hope you're being very closely monitored? In a situation such as yours I imagine the risk of NOT using aspirin would be greater than the risk involved in doing so but it's good to know what the risks are so that you can respond appropriate in the event of any changes. Take care.
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Thanks for your response, Hopeful. I was closely monitored for the first year, but I was on Tamoxifen and had just had my revision surgery when I got the clots. They also found that I had a narrowed iliac vein (May-Thurner syndrome) and put a stent in. With those risk factors gone, hopefully it was an isolated event. I am getting a colonoscopy soon and may ask for an endoscopy as well. Thanks for the reminder to be aware of bleeding issues with aspirin.0
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Good luck with your follow up, Peregrinelady. I do think aspirin use is a really good issue to raise with your gastroenterologist.
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Thanks, Hopeful. I see a general surgeon on the 19th and will let you know how it goes. In my small town, he is the person who does the most colonoscopies.0
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"In my small town, he is the person who does the most colonoscopies." Wow! That's pretty startling in this world of specialization. At any rate, good luck and good results.
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Icietla's Husband types this for Icietla.
---------------------------------------------Jan 31, 2017 02:51AM - edited Jan 31, 2017 03:10AM by Icietla
[...] the size of mine (configured as grown) could not be determined. The only certainty about that is that it was "at least 2.1 cm." Most of my tumor was removed at the time of my excisional biopsy. The biopsy specimen held together only just long enough to be measured lengthwise. There was a little more tumor tissue left behind until my next surgery.
[...]
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Jul 28, 2018 12:28PM - edited Jul 28, 2018 01:19PM by Icietla
[...]
I had excisional biopsy instead of needle biopsy. [...] Not all of my margins were "clean," and for the next two weeks, the very fragile tumor tissue remaining was presumably being eroded by blood sloshing against it (I could hear it sloshing) in that blood-filled cavity, presumably putting a veritable soup of it into my bloodstream.
[...]
----------------------------------------------------------------------------------------------------------In anticipation of my start on Letrozole, I read through the entire FEMARA thread (the long one) -- not to look for any reasons not to take the medicine, no! -- but to learn what effects I might fairly expect from it. As you can read from my posts in the Doing Well On AIs thread, my experience with Letrozole was easy. My present cancer diagnosis is (almost certainly) of another primary type.
Tamoxifen treatment availability came along in time for the case of my friend R***. She and her daughter before her were the first women in several generations of their family not to have their breast cancer treated with the older-fashioned mastectomy surgery complete with rib-scraping. Even some of their collateral male relatives had had that surgical treatment for breast cancer. R*** had modified radical mastectomy, and some of her axillary lymph nodes were found to be cancerous. She was started on Tamoxifen treatment right away. Because of her high risk for recurrence, she took Tamoxifen for the rest of her days, and she lived apparently cancer-free (or NED) for the rest of her days.
My breast tumor was large -- nobody knows how large -- , as was my Grandmother's breast tumor. Hers was also hormonally sensitive. There were no anti-hormonal treatments available in time to help with her case. She died from her breast cancer at age fifty, twenty-three months after her surgery and diagnosis. Any of these wonderful medicines might have saved or substantially extended her life. It has now been thirty-one and a half months since my breast cancer diagnosis, and to the best of my information and belief, I am (almost certainly) still breast cancer-free (or apparently what we call NED as to breast cancer), doubtless thanks to Letrozole.
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I stopped taking Tamoxifen after 2 starts. The first start (before & during radiation) resulted in anxiety that would awake me in the middle of the night unable to return to sleep. The radiation oncologist instructed me to stop Tamox during RT and resume a week after RT ended. So two weeks into the second start, I woke up in the middle of the night feeling suicidal...wanting to jump off a tall building. I stopped Tamox the next day. I am not sure if previous issues with anxiety, PTSD & depressionhave played a role, but Tamoxifen did not work for me. For me, I choose to have my mental health over my physical health.
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my mom who had dcis 2.5 cm, lumpectomy and rads dxd 2 years ago almost to this day just went off an AI. She's 74. Not worth the ses that made her feel like 90.
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Oh Dear! OC_Jane, I am so sorry to hear of that terrible trouble you have had with Tamoxifen.
Please discuss with your Oncologist whether you can take an Aromatase Inhibitor instead. Many patients who have had persistent side effects too troublesome from one AI (or another) have found continuing treatment tolerable with yet another of the AI medicines. I understand a full course of AI treatment can reduce one's recurrence risk by about half (about 50%).
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http://www.breastcancer.org/research-news/not-taking-hormonal-tx-leads-to-more-recurrence
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Dec 8, 2017 12:41PM - edited Dec 8, 2017 12:47PM by Icietla
swg -- For a good idea of all the recurrence risk difference adjuvant Tamoxifen makes (to study populations of ER+ breast cancer women) over not having any endocrine treatment (before Tamoxifen was available to treat ER+ breast cancer patients), read the first paragraph here in the Challenges In Diagnosis And Management section. As to the difference AIs make, see the third paragraph in that section.
http://ascopubs.org/doi/full/10.1200/JCO.2012.46.6599---------------------------------------------
Please read through this discussion thread linked here. It is a worthwhile read.
https://community.breastcancer.org/forum/78/topics/854403?page=1
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Thank you Icietla. After the incident, I was referred out to psychiatry (who then consulted w my onc and my PCP). My onc had mentioned a hysterectomy at one point but when I met with him two days ago, he gave me two options. First was a monthly injection with similar side effects. I don't want to go that route bc the suicidal ideation was so horrific that I would choose cancer than suffer thru that again. And once the injection is in my body, there's no stopping it. Unlike the pill, I won't be able to just stop taking it; I'll have to wait for it to wear off and that frightens me. Bc I'm not sure I'd survive another suicidal ideation. Most women seem to work thru HT and antidepressants. Most antidepressants don't work with me; when I was down that route years ago, I had to go thru a half dozen before we found one that seemed to work (seroquel--which is NOT an antidepressant, but worked to calm my thoughts), but caused me to gain 40# and made me catatonic. So maybe that's why other AIs won't work for me. His second option was chemo. Again, my mental and general well-being are more important to me than my physical health bc of my past experiences.
I've had some fragile years in the past. And having been where I've been, I choose to have a few, short, good years than have many long years feeling sick or having anxiety/suicidal thoughts. Maybe when the image of death wears off and isn't so vivid, I might consider the injection at a later time...but for now, I'm going to enjoy feeling good. Thank you for reaching out...it means a lot to me.0 -
I took tamoxifen for about 18 months, more than a decade years ago, before deciding my particular side effects weren't worth it. I now have much more serious breast cancer -- but my docs have been kind enough to say they don't think there's a correlation (really, who knows? But I'll take it.) I will have to decide again after my radiation is done, but it will be a different drug -- I will probably give it a try, if the stats back it up, and stop if I find it making too big a dent in my quality of life.
I really like that your question drew out such a wide range of responses. I wouldn't be too hard on people who advocate for what worked for them -- it's hard not to while you are going through this mess of medical decisions!
Very best with your own decision, and finding the info that clarifies it for you.
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OC_Jane -- You are very welcome. We all want you to be as happy and well as you can be. (((Hugs)))
yellowb -- I am so sorry about your new diagnosis. I hope your treatment goes very well for you.
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