TRIPLE POSITIVE GROUP
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Thanks for your response HapB. Too many difficult decisions! I know I have to make them but input is helpful
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HapB,
Many of us weren't diagnosed at Stage IA. Your Predict2 results don't apply to me.
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Well, my numbers are more supportive of hormonal therapy than yours. At 10 years, I could be one of the lucky 14!
Five year survival
66 out of 100 women are alive at 5 years with no adjuvant therapy after surgery
An extra 9 out of 100 women treated are alive because of hormone therapy
An extra 17 out of 100 women treated are alive because of hormone therapy & chemotherapy
An extra 22 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab
Ten year survival
33 out of 100 women are alive at 10 years with no adjuvant therapy after surgery
An extra 14 out of 100 women treated are alive because of hormone therapy
An extra 28 out of 100 women treated are alive because of hormone therapy & chemotherapy
An extra 37 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab
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poseygirl. I love what you wrote. Perfectly said.
Melanie
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Elaine, Hap - actually, the 9 who will be dead in 5 years aren't necessarily from BC.
If I play with the age at my diagnosis t 5 year intervals it appears that some of us are going to kick off just because of age.
The part that I find really confusing is this: If I was Her2 negative but everything else stayed the same, chemo would not have been offered but AIs would. Yet at 10 years, chemo would have saved 1.5 women and the AIs only 1.8. So why not chemo if the AIs are absolutely necessary for everyone??
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Yes, Posey...I hear you completely. Shelabela, been where you are before and am going to go through it a year from now as well. From experience, it took a good 8 to 10 years to feel like "I got this". Well, no, I ain't got this because here I am again. This time, being Her2 positive scares the poop out of me. I'm doing what I'm supposed to but feel like my life has been robbed and not sure I'll ever feel normal again. Group hug for sure xoxo
As far as those talking about AI and being crabby, or short, whatever. Ya know, I never really gave it thought but as I'm reading it, I think I was quite crazy the 9 years I was on those things. Looking back, I definitely did and said some things that created life long changes. Most, not for the best. I think of the things I argued over, fought about, pushed people away about and it's totally bizarre. I sure hope I pay attention to this, this time around....I don't want to end up like that again.
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Kim, were you on AIs or Tamoxifen for 9 years?
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Hapb - the mfg of my Letrazole is TEVA PHARM and Arimidix was ACCORD HEALTHCA. This is what I see printed on the bottles.
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lita - my guess about that is that with the advent of genomics for the chemo determination - OncotypeDx, Mammaprint, Pam50, etc., there is more information about the benefits of chemo for individuals, and more data gathered about benefits for Luminal As and those with very small tumors. Prior to this info more of us received chemo. There are not enough good current testing processes for determining whether there is benefit from anti-hormonals so the standard of care of that everyone is encouraged to take them.
hap - just wanted to note that early stage breast cancer includes up to stage IIIA, so much larger tumors and node positives are included. My stats, and Cancermath and Predict results, are much like Elaine's so I had no question about whether or not to do the treatment.
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Happy New Year! May we all have a much better year than last.
Hapb - I thought it was interesting what you said about Letrazole and mood swings. I have noticed that I get random bouts of crabbiness, increased anxiety and/or mild depression. It doesn't happen often but when it does I have a hard time getting myself out of the funk. It usually lasts no more than a day or two. I recall this topic previously and thought someone mentioned it could be related to fluctuation in estrogen levels. If that was the case, wouldn't all of us have these mood variations regardless of the medicine we're on? Or could it be that every once in a while we need to give in to the flood of feelings that are part of dealing with cancer?
I'm inclined to think it is part AI and part cancer experience. I write in a journal every day and I did notice that my last funk was short lived compared to previous bouts. I meditated more and removed myself from stress triggers and it seemed like these coping strategies may have helped. I don't really know for sure - just thought I would share.
A triple positive friend of mine just had her yearly check up - she is about 3 years out from her last treatment. We both go to the same hospital and I was there for my 3 month check up. I told her about my anxiety and she said the same thing happens to her every year. I think the stress/anxiety/depression for us triple positives is always present and maybe the AI makes it worse.
I don't want to have this fear/anxiety for the rest of my life and plan on doing what I can to manage it in a positive way. Not sure what that looks like just yet but I am going to figure it out! I may not be able to do much about the crabbiness and depression though except be aware and get help if it gets too bad.
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KimCee - triple positive is scary for sure and we are always in need of group hugs. I thank God for you ladies every day
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Lita, sorry... I was on Tamoxifen for 4 years and Femara for 5.
Thanks KB and Deni. Sending another group hug 🙂
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Kim, that's really lousy that you did all that and still recurred! On the other hand, it didn't take up shop somewhere else, which is the bigger thing
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Specialk, I WISH I could have talked my doctor into a Mammaprint, for the Blueprint results, but oh, well.
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hap - I was commenting on your post from 3 hours ago when you were responding to Elaine about early stage, not about the Predict stats. I didn't want other readers to infer that early stage only includes others with your same stats.
Also think it is important to note that KimCee is not experiencing a recurrence - her current cancer is in the other breast, not the original location, and is Her2+, her tumor 18 years earlier was not. Those two things, combined with the time between occurrences, would classify this as a new primary.
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Specialk, but aren't the anti-hormonals supposed to stop BC in the other breast? Or does that only apply whileyou're taking them?
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Lita, I like the way you think. Prefer this over setting up shop elsewhere for sure.
Even though I am a nurse, SpecialK knows way more than I do regarding any of this. I knew it was a new primary, and my oncologist referred to the Femara as a fail. So, I will defer to SpecialK for your answer to the post above, but based on what my MO responded, sounds like I should not have gotten a new primary due to all the tx I had 18 years ago. I tend to fall in those small percentages, therefore, stats don't mean all that much to me in the grand scheme of things
Hap, I may be way out there but I swear stress is a factor in my new cancer. I have great resistance, hardly get sick despite being around sick people, knock on wood, but twice in my adult life I experienced a major, stressful, horrible situation that knocked me down physically and emotionally. I swear it has something to do with it. As crazy as that sounds, I am a believer.
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oh, Lita, I remember my first MO saying later on in my follow ups that the benefit of the AI lasted after you stopped taking them. I don't remember the years he stated but it was in regards to a study
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hap - a recurrence would occur in the same breast as a previous cancer, and with the same hormonal receptors and Her2 status, or would be a metastatic spread of the original tumor. Occasionally you will see a cancer reappear in the same breast, or in nodes on that side, that has a change in hormonal receptors. This sometimes happens if the patient has had aggressive chemo, but I believe the new tumor can be tested with genomics to see if the cancer is indeed a recurrence in that case. Because tumors can be multi-focal in the same breast it is also possible that a new tumor in the same breast could have differing receptors and Her2 status and not be a recurrence of the original, and was present at the time of the first diagnosis but too small to image. This scenario would be more common with lumpectomy since mastectomy removes the majority of breast tissue - but not impossible for mastectomy since you can't remove 100%. Also, tumors are not homogenous, but in the case of ER+ patients the receptor percentage result is a sample of 100 cells and the number that stain positive gives you the percentage of positivity - however, another slide may result in more, or less, of the cells containing a receptor. ER- patients have no receptors. There is some variation in what level of ER+ can be treated as a negative - some feel that less than 10% should be treated as ER-, or the weakness should be factored into treatment decisions. Her2 status is tested somewhat differently, and it is possible that some parts of the tumor in the breast may not appear positive, or as strongly positive.
Lita - yes, anti-hormonals are supposed to stop a new cancer in the contralateral breast, but that is not absolute - the drug(s) can be ineffective or the patient can acquire resistance after a period of time. There is a carryover of an unspecified time after discontinuing anti-hormonals, but this would vary from patient to patient. In Kim's case she had stopped taking anti-hormonals for a fairly long period before her new primary occurred - it seems she took them for 9 years, which is actually a long time considering how long ago she was diagnosed - the data for longer term use wasn't really in yet, and her new cancer came almost 10 years later. Do I have that timing correct Kim?
Kim - I don't think there is any question that stress wreaks havoc on the immune system, which is what keeps many cancers and potential cancers, in check. I don't have any doubt either that stress can be a factor.
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SpecialK, you have my timing right. My oncologist and treatment center in NJ was a teaching hospital and research facility. It seemed he did things ahead of the gold standard back then. I was on pills a lot longer than my webmd breast cancer thread BC friends at that time.
Right now my MO is sort of pushing nerlynx. I may be wrong but the stats just don't overwhelm me to say yes. I have time to decide but leaning towards saying no.
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Kim - yes, your MO seems to have been ahead of the curve on prescribing anti-hormonals longer. I wonder what the effectiveness was for your original tumor - I had a BCI test on my tumor material from 2010 - it revealed that I fall into the 10% of patients who have a high recurrence risk and a low anti-hormonal drug benefit. The BCI test was designed for making decisions for treatment beyond five years, but since the test was done on the removed tumor my assumption was that I had been receiving low benefit for the initial five years, as well as dubious benefit going forward from there. My MO has asked me to remain on letrozole as long as I can tolerate it even in light of that test result since low benefit does not mean zero benefit. I am currently taking a break and want to have E1/E2 estrogen testing done to look at my estrogen levels from androgens being converted by aromatase into estrogen. If they are low enough that they fall into the desired range while medicated with anti-hormonals, I will not resume. If they are higher I will go back on for the remainder of the 10 years - which is up in the summer of 2021. I have been off for several months - long enough, I believe, for the washout - I don't feel appreciably different so I don't mind going back on.
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SpecialK, I would love the answer to the question regarding my original tumor. I never heard of this test either, but am going to ask my new MO. I guess when you get the results that your tumor is 100 % estrogen positive, it has nothing to do with how well it will respond to AIs? Boy do I feel uneducated on this front.
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hap - aromatase inhibitors assume that you are post-menopausal - so age is not really a factor and those of us taking them should not have very much circulating estrogen. The amount of estrogen per individual does vary and is influenced by a number of factors, including percentage of body fat. Here is some info on the testing, and normal values. Most MOs do not test for this since 5 years of anti-hormonals are standard of care, based on trial data. I am 18 years surgically post-menopausal, had enough symptoms to know I had very little circulating estrogen prior to diagnosis with breast cancer. I have never had the type of side effects you experienced on anti-hormonals, so I don't know whether existing estrogen levels are a factor or not in how these drugs are tolerated. The standardized dosage was derived by trialing a variety of doses for safety and efficacy when measured against other anti-androgenic drugs to determine a tolerated and effective dose. Is it truly one size fits all? No, but most oncologists are unwilling to deviate from the norm.
https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/84230
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kim - here is a link to the BCI test. I am 96% ER+ and apparently one of the small percentage who do not derive much benefit - so I do feel vulnerable. Higher ER+ percentages generally are more responsive to anti-hormonals, but again, not an absolute. In light of your second diagnosis it might be worth it to have this test done prior to the 5 year point. It is also surprising how few people really benefit from extended anti-hormonal therapy. The test was not covered by my insurance but this lab, Biotheranostics, has their own insurance appeal department - they will handle all appeals and if exhausted and still denied, they do not charge insured patients. If patients do not have insurance, they have a patient assistance program to reduce the cost.
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hap - you can ask your MO, GYN or primary care to order the E1 and E2 estrogen tests to help determine how much estrogen you have in an un-medicated state. If it is low enough you may not need to suppress any estrogen. You can also ask your MO to order the BCI test now to determine your recurrence risk and drug benefit, rather than waiting for 5 years. Be aware though that this test is not particularly mainstream yet and if you are being treated at DF, your MO may be resistant as this test was designed for Her2- patients which can skew the results to high recurrence risk, but should not interfere with the assessment of anti-hormonal drug effectiveness.
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Thank you Special, I am definitely going to inquire.
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SpecialK, you said that you had enough symptoms to know that you didn’t have much estrogen in your system - can I ask what they were
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Shelabela
PosseyGirl nailed it. Also, if you need help, get it. Maybe your survivor counsel will help.
I am not fond of the word survivor. I did not survive ... I have thrived!
I thought once I passed the diagnosis anniversary, the mastectomy not anniversary ..., I would get back to normal. I told my MO Team not to use the term "new normal" with me. I don't like that term either.
I looked at some pictures from before diagnosis and I realized I will never go back. I won't look the same. Be the same. Our pastor said last Sunday in his sermon tha 65% of people experiencing a life changing event and knowing they must change (i.e., having a heart attack and chaning one's diet) will not changed.
I thought about that. Unlike other health issues, breast cancer is visible to us daily. Our physical changes last forever. Dang it! For six decades Iparted my hair on the left. What happened that it parts on the right nowadays? I know this is petty but it is something I can not go back to.
So, I look at this woman in the mirror and I am working to understand who she is. Some of the old Vicky is still there but there is a new woman. I like her better. I am kinder and happier. With each anniversary I work to see my progress. Each anniversary gets away from the severe meltdowns. They are getting easier and more of a celebration.
Stay strong.
Vicky
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lita - many very wicked hot flashes a day, night sweats, fatigue, insomnia, modest weight gain - vacillating between 5-10 lbs, thinning dryer hair, some increased joint pain and increase in the discomfort from pre-existing degenerated disks in my lumbar, mild osteopenia and a dramatic increase in total cholesterol - between lipid panels went up 100 points.
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One of the reasons I'm having a hard time managing my emotions is the unexplained symptoms I'm having. I have some anemia they are tracking (my hemoglobin is better than the blood work before, but it's still below normal. They checked for myeloma patterns and saw none). I have back pain that is persisting in my upper thoracic and now lower lumbar. I've had both a bone scan and an xray (for the upper thoracic), both of which showed nothing. I get chills quite often.
I'm concerned about this pain in my spine. Could this be letrazole? Zometa? Does it make sense that newer locations of pain would a) show up months after starting Letrazole - 6 or 7 months later! or months after my first Zometa infusion - I've had 2?, b) stay in the same spot(s) for a persistent amount of time? I've had the upper back pain for 6 weeks and the lower started in 2 weeks ago. It's unlike me to have persistent back pain, so I'm getting worried. I feel like I should now ask for an MRI.
So the constant symptoms are bringing me right back down. I'm struggling. I'm not sure the emotional struggle is a direct link to the treatment. I believe it's related to the above - just constantly feeling vulnerable.
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