Unable to tolerate tamoxifen.
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yorkiemom...no one is disputing the importance of anti hormone treatment. However the fact remains that 50 percent of us do not complete the 5 recommended years due to SEs. Add the number of us that stay them and tolerate the SE from mild to severe and that's a really big number. I just think it's important to validate that. Also, to be fair unfortunately if you look on the stage 4 boards there are also women who did do anti hormone therapy. That is also a reality. Good luck to all navigating this disease and making tough decisions. We are all here to support each other.
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Dtad, not criticizing anyone for their choices. I just think people should be informed about the risks of quitting hormonals early. Some people simply cannot tolerate these meds, I get it. That's all. Over and out. Best wishes for all!
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Everyone can make their own decisions when it comes to whether or not to take Hormonals. That wasn't my point. The issue I have is when they make their decision on false information (such as with an Oncotype of 22, hormonals only helps them 3%). She needs to get better, more accurate information on exactly how much Hormonals will help her before weighing her options. That is what I was pointing out. I had an oncotype of 20 and I have a 15% chance of recurrance/spread. If I don't take hormonals, that number is doubled - so 30%. A score of 22 is even higher than mine, so she needs to understand how much hormonals could help her in weighing this.
Lastly, Optimist, why did you decide I need educating about what a 22 Oncotype was? I have a freaking 20, did NO CHEMO... and was not pushing chemo at all. People's side effects could be from a number of things, the last thing I want to do is just go with the echo chamber and assume it's all tamoxifen's fault. That kind of group think doesn't help someone.. If I believed something - and someone offered another answer that countered my assumption - I'd welcome that feedback. It seems you think PTSD is somehow dismissive? I can tell you PTSD is a REAL thing and creates untold anxiety and symptoms. (you are the one invalidating those who have PTSD apparently). She should look into it... that is all.0 -
Sorry if I missed, is there any reason you can't try an AI?
If tamoxifen is giving you unbearable side effects, I don't think long-term compliance would be possible. As someone who had weird side effects with Aromasin (sudden frequent lightheadedness, tingling), I can tell you that it's easier for others who don't have any/minimal side effect to tell you to try it. I have virtually no side effects on Tam (so far), but after my experience with Armosin, I know how debilitating some side effects can be. Thankfully, there are other options.
dtad, wow, that 50% non-compliance figure seems too high.
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Lisey, below is BarredOwl's post of 15 Jan. The links show that an Oncotype score of 22 has a much lower recurrence score with or without hormonal therapy than you've posted. As you were posting about misinformation on this thread, I think it's important that you quote from the actual graphs and statistics provided by Oncotypedx.com or other medical websites.
Jan 15, 2017 12:58PM - edited 24 hours ago by BarredOwl
Regarding the confusing reference above to a "high intermediate range per the Oncotype testing" in reference to a person with a Recurrence Score of 22, please note the following.
The standard risk category ranges for the OncotypeDX test for invasive disease (in node-negative or node-positive disease) based on various validation studies in these groups, are and have always been as follows:
Low-risk: Recurrence Score < 18 (i.e., 0 to 17)
Intermediate-risk: Recurrence Score 18 to 30
High-risk: Recurrence Score ≥ 31 (i.e., 31 to 100)
For links to numerous scientific publications setting forth these standard ranges, see this post:
https://community.breastcancer.org/forum/69/topics/840731?page=1#post_4624429
A Recurrence Score of 22 would be in the lower half of the standard intermediate range of 18 to 30:
18--19--20--21--22--23--24--25--26--27--28--29--30
Secondly, it is appropriate to consider a variety of additional clinical and pathologic factors with an intermediate Recurrence Score of 18 to 30, as indicated on the Genomic Health web site (scroll down to list of factors):
Genomic Health: http://intermediate.oncotypedx.com/en-US/Using-The-Intermediate-Recurrence-Score/Integrating-The-Intermediate-Recurrence-Score.aspx
With regard to the potential benefit of chemotherapy, it is possible that there are differences within the intermediate range, such that chemotherapy benefit might differ by recurrence score or other factors. This is also discussed on the Genomic Health web site (scroll down):
Genomic Health: http://intermediate.oncotypedx.com/en-US/The-Recurrence-Score-Result/How-An-Intermediate-Recurrence-Score.aspx
For a more detailed discussion about the intermediate range, see this earlier post:
https://community.breastcancer.org/forum/147/topics/842209?page=3#post_4768276
In connection with the question of added chemotherapy, the intermediate range is an area where a judgment call must be made in view of all relevant factors, as well as the personal risk tolerance of the patient. While additional gene expression profile testing may be considered, such secondary testing is not always recommended and appears to be less common outside of the United States. (From her date formatting, I suspect Vix lives elsewhere.)
It is possible that the confusion is based on certain investigational ranges being used in on-going clinical trials. In this regard, the prospective TAILORx trial in node-negative (N0) patients and the prospective RxPONDER trial in certain node-positive patients are using different investigational ranges, but they are still in progress.
Late in 2015, some preliminary results were published from the TAILORx trial in node-negative ("N0") patients scoring 0 to 10 who received endocrine therapy alone. These results showed that the test is quite robust in this sub-set of "low risk RS" patients (N0, RS 0 to 10). However, these results (from 0 to 10 only) did not operate to change the standard ranges. This is because they do not speak to outcomes for those with other scores (11 and above). We are still awaiting TAILORx trial results in its slightly differently defined investigational "intermediate" risk (RS 11 to 25) and investigational "high" risk (RS 26 and above) groups, so the standard ranges are still in effect (<18; 18 to 30; ≥31).
The on-going RxPONDER trial is still evaluating whether adjuvant chemotherapy is beneficial in patients with hormone receptor-positive, HER2-negative breast cancer with 1-3 positive lymph nodes and a Recurrence Score of 25 or less.
Of course, the investigational ranges reflect considerations of the magnitude of the recurrence risk associated with particular Recurrence Scores, and patients may wish to discuss this with their MOs.
BarredOwl
Also, regarding the original poster's dilemma and your response, dtad couldn't have said it better:
Jan 14, 2017 09:13AM dtad wrote:
Lisey....IMO we need to be very careful about not validating SE from anti hormone treatment. How could you possibly know that Vix is suffering from PSTD and her symptoms are not from the Tamoxifen? Especially because they went away immediately after stopping the Tamoxifen. I'm happy for you and anyone else that does well on anti hormone therapy,and Im not disputing their importance. However, that does not negate those who suffer SEs on them! Please try to be more sensitive to what others are going through. We are here to support each other. Good luck to all navigating this disease.
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My long post from Page 1 of this thread was to explain that a Recurrence Score of 22 is not in the "high intermediate range per the Oncotype testing" as asserted by someone else. A score of 22 is currently in the lower half of the standard [intermediate] range. Additional background regarding the intermediate range was provided for information only.
Lisey, you have reported your Oncotype Recurrence Score as 20. Elsewhere, you posted your node-negative report, and the associated 10-year distant recurrence risk after 5 years of tamoxifen printed next to chart was 13% with tamoxifen alone:
https://community.breastcancer.org/forum/147/topics/842209?page=3#post_4768140
Another member here with a Recurrence Score of 22 and node-negative disease stated her risk as 14%, which is consistent with the first chart in the node-negative report for 10-year risk of distant recurrence after 5-years of tamoxifen:
I think we all agree that without tamoxifen, the recurrence risk would be greater than shown in the node-negative report (which assumes receipt of endocrine therapy). I am not qualified to provide an estimate of the risk without endocrine therapy in any particular case.
Vix1970 also seems to have expressed some doubt about the 3% estimate (increased risk without tamoxifen) provided or how it was determined.
My recommendation to Vix1970 in this regard is to obtain confirmation and clarification from her current medical oncologist and/or to seek a second opinion:
https://community.breastcancer.org/forum/78/topics/851778?page=1#post_4884055
BarredOwl
[Edited to add: "[intermediate]" in first paragraph.]
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First of all.. Optimist... Here is my actual report. It's 13% rather than the 15% I remembered (which is still way higher than you seem to think).. but a score of a 22 would be HIGHER than mine.. so around 15% for them - and 30% if no hormonals. It's not lower than I stated at all. My risk is DOUBLED if I don't take tamoxifen or some other hormonal, so it's 26%. There is NO WAY hormonals only help an Oncotype 22 of 3%.. I think she's misreading the report entirely. And if she's not going to be on hormonals her true risk needs to be evaluated.
Lastly, There was a study showing that women who expected to have moderate sideeffects had more SE's than women who expected to have little side effects. Our minds can be large factors for our bodies response. If everyone on here is saying what a monster Tamoxifen is, and women believe it - they will attribute ever little thing to it - even when it could be something else. I'm not saying she's not having something happen, I'm saying it absolutely could have a different cause - her brain.
https://www.sciencedaily.com/releases/2016/08/1608...
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There was a study showing that women who expected to have moderate sideeffects had more SE's than women who expected to have little side effects. Our minds can be large factors for our bodies response. If everyone on here is saying what a monster Tamoxifen is, and women believe it - they will attribute ever little thing to it - even when it could be something else. I'm not saying she's not having something happen, I'm saying it absolutely could have a different cause - her brain.
This may be true only to some extent, and I used to think like this until I started Aromasin. No, trust me, it wasn't all in my head.
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A study of women receiving hormone therapies such as tamoxifen as part of their treatment for breast cancer has found that the number and seriousness of side effects they experienced were influenced by their expectations. The study found that women who had higher expectations of suffering more and worse side-effects before their treatment began did, in fact, experience more after two years of adjuvant hormone therapy.
https://www.sciencedaily.com/releases/2016/08/1608...
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Yes, that one study found it more likely. However, that study involved only 111 women, too small to say anything definitively. Also, there are people like me. I never had trouble with medications, I was absolutely sure I would have no trouble with Tamoxifen. It didn't even cross my mind - until I started having problems.
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Lisey, I read that study when it came out first. I can only agree with it to some degree. It's partly nocebo effect. But no, not all side effects are in people's head. My experience with Aromasin vs tamoxifen was like day and night. Like tamoxifen, I started Aromasin with a positive attitude and was ok for 3 months until side effects hit me. So I'm hesitant to dismiss other people's side effects so quickly now.
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By far the most worrisome (but not the only) side effect I've experienced from Tamoxifen is the thickening of my uterine lining--which is definitely not in my head, LOL. I think it is important that even women who are taking Tamoxifen and not experiencing noticeable side effects be aware of its possible not so noticeable side effects. It is important that each of us discuss with our gyno doctor the increased risk of uterine cancer for Tamoxifen users and if/how we are to be monitored for this. From what I've been told, this is especially important for those of us who are taking Tamox, but no longer menstruating.
I have another trans-vaginal ultrasound scheduled on Friday. The last one got me a uterine biopsy (ouch), so I guess it is weighing on my mind today.
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I remember that study when it first came out. I felt it was insulting. I expected to have minimal side effects and that hasn't been the case. AIs were especially tough on me. Tamoxifen is no picnic but I'll stick it out. I balked at doing any HT in the beginning since my oncotype score is so low. My onc said "that's a lot of faith to put in that one number". I have to agree with her. Sometimes our numbers are not in line with each other and of course there is no certainty. Most of us have learned to be our own best advocates, often by something that was overlooked by our capable but over- burdened docs.
We each just have to do the best we can.
Good discussion.
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bottom line for me was this.....if taking Tamoxifen was making me miserable there is no quality of life in that. What exactly is the point to taking a drug to prolong life or prevent early death that leaves you feeling borderline suicidal?
Yes this does happen to some of us, do NOT downplay the experience of someone. I walked thru hell with surgeries, infections, 6 rounds of chemo and radiation. But when it came time for HT and it made me feel like that I knew it wasn't gonna work for me.
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I went through chemo, surgery and radiation, only to find out that I'd feel much worse on the anti hormonals. Even though I researched the heck out of BC, I have been shocked by this experience.
Ou society does not let us heal from these brutal treatments. Most of us are expected to be working, taking care of families and and returning to our old selves again. If I could rest more and take the time to live the healthiest possible lifestyle, I think things would be a wee bit easier for me. Y'all are so courageous.
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labelle - I have a TVU and biopsy next Tuesday. Cheers!
PS - ouch is right!
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Lisey....sorry don't want to be contrary but I can't believe you put any stock into that study! I was actually offended that it was even done! With all the issues of BC that need to be studied, this is what they pick!? How insulting! I wonder if this study would have been done if BC was a male dominated disease! I think we are smart enough that we can be informed of the SEs and not experience them because of it! How about working on better treatment options instead of telling us the SEs we are experiencing are all in our heads!!
PS...I would also like to add tat the name of the thread is unable to tolerate Tamoxifen. How about a little support!
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I have to bite my tongue on this one, as it reminds me of the Democrats and Republicans after the election. Personally, I am a Democrat and I would vote for taking the medication and finding one that works. If women want to ignore the importance of taking hormonals, that is fine. If, we the other side believe taking hormonals is very important, that is fine. When people have their mind made up, there is no room for discussion. I think it is prudent to do whatever we can to lower our risk of recurrence. I also believe the preconceived expectations do play a role in how we accept something new.
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Lisey - Where did you get the worksheets that you attached? Is it part of the oncotype? I see my MO tomorrow and wonder if I can get something like that. I will not be getting the oncotype now, as they have decided I will be treated HER+, so will get chemo.
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Michelle, I see this discussion as similar to recent politics, too. I see that many people have difficulty putting themselves into another's shoes and really trying to understand why they see things the way they do and why they behave the way they do.
"I would vote for taking the medication and finding one that works. If women want to ignore the importance of taking hormonals, that is fine."
I'm pre-menopausal, so Tamoxifen was it for me, unless I did ovarian suppression/removal. I had an Oncotype of 9. Without hormonal therapy my risk of recurrence is about 10-12%. My oncologist recommended trying a half-dose, which I did. When that failed to help my symptoms, we discussed ovarian suppression, which he didn't think was a good idea for me. Because my risk of recurrence is so low, he then gave his blessing on my choice to stop taking Tamoxifen. He still sees me regularly. As you can see, I, and many like me, have NOT ignored the importance of hormonal therapy. I know it reduces recurrence by about 40-50%. I did not make my choice lightly.
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Tinyfrog:
The two charts posted by Lisey are from her node-negative Oncotype test report. She received the test because she had hormone receptor-positive, HER2-negative disease. The first graph illustrates the relationship between Recurrence Score (x-axis) and 10-year distant recurrence after 5 years tamoxifen (y-axis) (i.e., with tamoxifen alone). The second graph illustrates the difference in 10-year distant recurrence observed in a group which received chemotherapy (CMF or MF) plus tamoxifen versus a group which received tamoxifen alone, according to Recurrence Score. These graphs are based of the results of published clinical validation studies.
In the HER2-positive setting, different clinical studies are available, conducted in HER2-positive patients, that inform current understanding of distant recurrence risk and potential benefit of trastuzumab-based regimens. Do not hesitate to ask your medical oncologist about studies that are relevant to your situation, what is known about recurrence risk in patients like you, and the potential benefit of any proposed trastuzumab-based regimen.
BarredOwl
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SummerAngel, whatever people choose, they have to live with the consequences. I am not much older than you, have regular cycles, with no sign of any type of menopause. I eat well, am very active, but have decided a different route for myself. Ovarian suppression was on the table, but now I am electing to have surgery. Ovarian suppression plus AI, in the Soft study, has been seen to have a better result. I want to be able to take whatever hormonal therapy agrees with me, and I understand it could take several months for it to level out in my body. If I were in my 30's, having children, that would be a different story. I also understand about weighing the risk and benefits. I have been in the contemplation phase for over 2.5 months and have talked with alot of women who have either done suppression or removal of the ovaries. I made sure that my physicians were communicating, so they could come up with the best plan for me. Everyone is an individual, with individual choices. I look at people that are stage IV that did not do hormone therapy, and now wish they would have tried harder to find one that works. I am not a person that can live with regrets, so I have to push the envelope for as much risk reduction as possible.
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BarredOwl - Wow! You know a lot. Thank you so much for taking the time to explain. Sorry, I keep pushing on the Oncotype - it seems like a more personalized report based on one's own tumor. I won't be getting that, but I can do as you suggest and ask my MO about similar studies in people like me - not exactly like me, just HER2 + overall, I guess.
SummerAngel - I saw in your diagnosis that you had cancer in both breasts, and multifocal, like myself. How did they know to look at both breasts?I had been having mammograms almost every 6 months since I was 29. In my mid 30's they seemed to be looking more closely at calcifications in my LEFT breast. I ended up however, getting a mammogram, US, and biopsy for a 2.5cm lump in my RIGHT breast that I brought to my doctor's attention in 2013 at 43. I was only told it was normal, and not given the report details that they weren't actually sure what it was, nor their recommendation to watch it closely, watch for changes, and get US to note size changes in 6 months - so none of that happened. When it started to get painful I requested another mammogram in Sept 2016, and also got an US, and another biopsy - and they said it was normal again - a fibroadenoma; and that was going to be the end of it. At the last minute they decided to send me to the breast surgeon, who decided to take it out because of it's shear size now, but also said that she would have taken it out back in 2013 because the report, which I never got, said they weren't sure what it was, and if you don't know, she takes it out to check. They were so wrong about it. After they took it out, it ended up being a 9cm phyllodes with at least 8 cancer sites.
How can I be sure there isn't anything else in either breast? They almost didn't do anything about the 9cm lump! You don't need to mammogram to see that, just your own two eyes. How am I going to be able to catch anything smaller than 2cm at stage 1? I guess I should ask my MO about this too.0 -
SummerAngel - Let me explain. Do you remember the psychology test where you're suppose to watch a basketball game and later say who has the ball? The entire time you're focused on watching the ball, there is a man in a gorilla costume running all over the court that no one sees because they're focused on watching the ball? After the first biopsy in 2013, any subsequent mammogram referred to the lump as the benign proven bump, and never looked at it again until I brought it to their attention that it covered my entire breast. They assumed it was a sudden growth, but I said it wasn't - it was probably steadily growing and no one bothered to re-measure. And on the flip side, once the lump was that big, no one is bothering to look at anything else.
So, that is why I am asking how they decided to look further for an additional lump in the other breast after one was already found.0 -
I have been off Tamox for 3 days. I was hoping to see a reduction in brain fog, short term memory problems, exhaustion, difficulty with planning, judgment, organization. Still feeling the same.
I had an extensive neuro eval today. Results not for a few weeks. Possibility of a follow up brain scan.
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A really important thing to realize is that the half life of Tamoxifen is quite long, like 14 days, so as I understand it,it will take a full month for it to be completely out of your system.
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farmer~ Thank you. I had seen a post here where someone said they felt better after two days. I will hang on.
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Tinyfrog - your story is interesting because I could have had a similar experience, but because of my very wise breast surgeon, who is the doctor who did my first biopsy, they were able to discover and treat the cancer more quickly. I had never had a mammogram and was 45, planning on making an appointment soon. My gyno had actually put in the order to the imaging center for it. In the meantime I felt a lump in my left breast while taking a shower. I went in for the mammogram (both breasts) and they said they thought the lump looked like a fibroadenoma but that one area was "obscured" so they sent me for a biopsy. My breast surgeon did the biopsy and the result was a fibroadenoma. At that point I could have ignored the lump but my breast surgeon said she just didn't like the way it looked and suggested I have it removed. I did, and it turned out there was 2.2cm of IDC inside the fibroadenoma. Very rare. After that my breast surgeon sent me for a breast MRI. I'm not sure it's standard care for her or if it was because of my age. They found the 1cm IDC in the right breast with the MRI, and discovered it was multifocal only after mastectomy.
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Michelle - "Everyone is an individual, with individual choices." Exactly.
If on the small chance I end up with a progression, I will have no regrets.
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HI all...To start I never disputed the importance of anti hormone therapy. What everyone is missing is the name of this thread is unable to tolerate Tamoxifen. It was a QOL issue. Again, I'm happy for anyone who does well on it, but unfortunately that's not a big number. Vix came to this forum looking for support because her life had been turned upside down on Tamoxifen. She was scared and looking for support, not more scare tactics. My intent was to validate her concerns and plead for better treatment options. I agree that many of us only look at our own situation and do not empathize with others. Let's try to remember we are all on the same side here.
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