TRIPLE POSITIVE GROUP
Comments
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Hi!
Re: aromotase inhibitors -- I'm on Aromasin (exemestane) -- it's OK. I've been on it since February 2015, and began it at age 47. I could live without the hot flashes, which are particularly nasty in the evening/night hours. Aromasin also made me moody, and has given me full-blown osteoporosis. To cope with the mood swings, I'm on Celexa. To address the osteoporosis, I'm on Fosamax. I feel fortunate that I've avoided the joint pain and stiffness that many other breast cancer patients have experienced on AIs.
I've always said that the best AI is the one you tolerate best! Hope you find one that works for you.
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HapB,
I had a lumpectomy first more because my husband thought it sounded easier. Deep down, I really wanted both breasts GONE. I had close margins - so after chemo I was going to need either another lumpectomy or a mastectomy. I had lots of time to research my options during chemo and saw a cardiologist for advice since the radiation would be on my left side near my heart and decided to do the mx (of course, even with mx there was a small chance that I could still need rads).
There are no easy choices with bc. We all chose the path that helps us avoid the things we fear most. Surgery was no picnic, and it has lots of risks, but I feared radiation more. It may not be a rationale or justified fear, but I was happy to skip rads. It is good that we have options.
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Ho, hum. Just sitting here waiting to get my pathology report... and in trying to decipher all the little abbreviations under everyone's posts mean I have come to realize that some of you with relatively recent diagnosis are getting Perjeta and some are not, even with no nodes, etc. And so I'm wonderingly how come?
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Hi Lita!
In the United States, the national guidelines recommend Perjeta for tumors larger than two centimeters in size, to be used during neoadjuvant (before surgery) chemo. Because of these guidelines, insurance companies are most likely to pay for Perjeta for those who who meet those criteria. However, some medical oncologists do prescribe Perjeta for adjuvant (after surgery) chemo, and insurance companies have been willing to pay for such treatment.
In Canada and other countries, it is sometimes more difficult to get Perjeta because it is relatively new (and there are fewer studies of its effectiveness) and expensive.
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ElaineThere - Thanks for the information! I'm wondering what makes one doctor throw everything out there at a Stage 1 BC while others choose not to. Most curious!
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Hap - like Debiann, I take Anastrozole. After being on the AI thread, I asked for TEVA after my first 90 days were up. I do think my joint pain is better with that switch. Walgreens carries it - don't know about other pharmacies.
Just had my six month series of checks - echo good, mammogram clean, now breathe!
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Yay, Taco! I always feel better after I make it through my screenings. Yes, breathe!!!
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Thanks for the replies on my post. I have been so positive. It is funny but all of a sudden I just had a couple of really bad days. Worrying! I ended up on some posts on alternative methods looking for suggestions for vitamin supplements, diets etc and just found a lot how chemo etc just makes the cancer stronger when it comes back...I did decide to leave that forum but still feel so vulnerable...it is hard to accept that this illness just does not go away, I still carry it and it can pop up whenever..it is just something that is very hard to accept and live with even though I try my very best. The thought of a reaccurance just freezes me of fear. How would I handle that kind of message? I just refuse to think about it, perhaps that is why I haven´t been on these boards much but it just came back and hit me over the head like a hammer...:( I was hit with a very bad cold and an infection in my scares from my breast reduction on my healthy side (very happy about the result) and my thoughts went to my white blood cells fighting infection instead of the cancer cells...Is it very damaging getting other types of infections while on herceptin?
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Kattis,
You've done the best you could to prevent recurrence. And that's all you can do. That's all anyone can do. Think about doing some things you enjoy, now and in the future.
((Hugs)) It gets better as time passes.
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Everyone has bad days. They will get to be less and less frequent. Have some fun. If you need Ned's for anxiety ask for them.
Hugs!
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How can one tell what brand of Exemestane you are on? know mine is a generic but not sure who makes it.
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meg - it should say on the label from your pharmacy, sometimes in tiny print - usually includes a description of the actual pill/capsule and the manufacturer's name. Another option is to investigate by the look of the med - with a pill identifier - which you can use by entering the identifying info from the pill itself, or by entering the drug name and it will show you images, like this link:
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hi all,
gotmy pathology back.nodes negative for scarring and cancer, what is left is a tumor bed with only residual cancer cells.not exactly pcr but i am happy with the result.:). praise God!also the dcis in the lef which showed microinvasion in mri did not show any microinvasion in the final pathology.
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Good news, kae!
Sounds like you had a good response to chemo. Hope you're recovering well from your BMX.
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I posted last week about a lump in the lymph node above my collarbone that I had biopsied. The pathology report came back today and there were no cancer cells detected, just scar tissue. My cancer team is getting together on Thursday to discuss my case and try to determine what caused the scar tissue. It's possible that there were cancer cells in there but the chemo that I just finished killed them, and my body's reaction was to wrap the dead cancer cells in scar tissue. I'm praying there's another explanation because I believe cancer cells located in those lymph nodes put me at a stage IIIc.
All in all, they're the best results I could have hoped for so I can finally breathe a sigh of relief.
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Awesome, SoxFan75. Keep us posted!
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Soxfan, what a relief! I've been wondering all day what you had learned -
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soxfan & kae - great news! Keep positive 💕💕
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Kae 99 - Super great news about your pathology, I am so happy for you! Thank God. Sending prayers and hugs for continued healing my friend xoxo
Sox, I'm relieved to hear the good news about your biopsy! Thank God again
Taco1946 - congrats on the great check up, that's truly wonderful! Thank God once more
Kattis - nice to hear you are doing well these days! You are positive and forward thinking, good for you!
It is very inspirational and encouraging to see these updates, thanks for sharing!0 -
Hap - I was on Arimidix for 7 months and tolerated it well initially. My body aches got so bad I could barely move. Other SEs were constant runny nose, dry everything, thinning hair due to breakage, and severe fatigue. My MO switched me to Letrazole and so far the SEs are far less severe. My fatigue is not quite as bad and the only pain I have is in my tailbone. My naturopath put me on Bosswilla (sp), a natural herb for pain and fish oil for inflammation. I only have 2 HP infusions left so maybe the tailbone problem will go away when I'm done!
I asked my MO about going off the AI but he advised against it. The way I understand it from his explanation is the AI wipes out the hormones that the cancer needs to grow. For triple positive, the AI offers the best fight against recurrence- in his opinion for my particular diagnosis. I love that my MO always reminds me that every patient responds differently and what might work for one may not work for another. This could explain why there are so many variables to treatment!0 -
Hello, all! Newly diagnosed and having trouble finding information about being triple positive. Most of sites I'm finding don't even list it as an option, much less offer any insight as to how treatment might differ from others. Any suggestions on where I can get more information? Thanks in advance!
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Hi Fleur!
If you're interested in searching for more information about your diagnosis, you might be better off searching for information about HER2+ breast cancer.
See http://www.breastcancer.org/symptoms/diagnosis/her2
About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (e.g., Herceptin) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.
Your case is interesting because your cancer is apparently Grade 1. It is also small, less than one centimeter. May I ask, how small? That may impact whether or not your doctor recommends chemo.
((Hugs)) and best wishes!
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Hi Fleur, Sorry your diagnosis has brought you here, but this is a great community. Elaine has described HER+ well and the link to the article on this site is a good one. My cancer is quite similar to yours small, triple + and State 1A. The difference is that I had two tumors, so a lumpectomy wasn't an option, we had to go with mastectomy (and at that point, why not get them both off!)
I think one of the main differences in treatment is that if you receive chemo, you will likely also get Herceptin which is specifically to target the HER+ protein. With my diagnosis, my oncologist recommended a low-dose of 12 weekly Taxols which has been more tolerable than some of the more aggressive chemo cocktails.
Good luck to you!
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11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ - that's me. Being treated for the triple positive. Taxol and brachytherapy (because of small tumor), and but now AI. Good info, Elaine.
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Fleur,
It is interesting, as Elaine says, that you're only Grade 1 and HER2. Can I ask what your HER2 ratio/numerical value is?
I'm new here myself and am waiting for lumpectomy pathology report results
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Hap - yes, and no. Different studies are showing treatment response that differ based on HER2 ratio, and oddly enough, the response is less for those with a low HER2 ratio and/or cell copy number, which raises the possibility that HER2 positive cancers need to be divided into different groups regarding prognosis and treatment other than HER2+driven and Luminal B subgroups.
Nothing concrete at this point, and it may not prove true, but it's interesting.
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Thank you all for the information & support! I'll answer questions as best I can - I'm still learning some of the terminology and have only had mammogram/ultrasound & biopsy at this point. I have an MRI tomorrow and second meeting with surgeon on Monday (no oncologist yet).
Elaine, it's marked as 8.9mm on the ultrasound image & listed as 10mm on the path report.
Lita, here's what the path has re: HER2 - Amplified; HER2/CHR17 - 4.3; Average HER2 copy number - 6.8 signals/cell. Is that what you were asking? I've also seen the studies about the subgroups and was trying to find more, but there doesn't seem to be much out there.
One reason I'm posting is because in my surgeon visit Monday, he seemed to feel like chemo would not be necessary, but the next day my nurse navigator told me that HER2+ means chemo without a doubt. Needless to say, that's got me confused, and I know neither of them is an oncologist, but still it's disconcerting to say the least! My care team will be in conference while I'm getting my MRI so I'll find out what they say Monday when I go back for the MRI results. Trying to stay positive!
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Fleur,
Since you're close to 1 cm, I suspect an oncologist would recommend at least Taxol (a taxane chemo) to be administered with targeted therapy (Herceptin). Deni1661 recently participated in a trial where she didn't do chemo -- she did Herceptin + Perjeta (targeted therapies) + oral aromatase inhibitor. She had excellent results, so you could ask your onocologist about that trial if you like. But, yes, once HER2+ cancer is over 5 mm, oncologists traditionally recommend chemo.
((Hugs)) I know it can be very confusing at first! Good luck with your MRI!
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fleur - generally, tumors larger than 5mm receive systemic treatment if they are Her2+, which includes chemotherapy and targeted therapy like Herceptin. It appears that your tumor does not meet the size threshold for inclusion of Perjeta as a targeted therapy, as that is 2cm or larger, or can be administered if the tumor is smaller but you present with positive nodes. What this means is that you are likely to have surgery first, and if your tumor size remains consistent with what has been imaged so far, be considered for a less intense chemo regimen, like Taxol and Herceptin in 12 weekly infusions, then continue the Herceptin only for a year. Currently, it is mainstream philosophy that chemo helps the Herceptin work better. Once you are done with the chemo portion you would also be adding anti-hormonal therapy to help keep the ER+ element from fueling a recurrence.
Here is a link to the NCCN guidelines page with systemic treatment considerations for smaller Her2+ tumors:
https://www.nccn.org/patients/guidelines/stage_i_ii_breast/#50
Also, some info for systemic treatment for stage 1 patients who are Her2+, there is also the link within this article to the actual study:
http://www.breastcancer.org/research-news/herceptin-plus-taxol-reduces-recurrence
Important to remember too, surgeons are not the physicians who specialize in systemic treatment. Rely on your oncologist for those decisions.
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Kattis894. I too have been 'off' BC.ORG here lately as I read something that really freaked me out about re-occurrence. I mean, I started waking up in the middle of the night again over this cancer.....that hadn't happened for a long time. So, I was taking a break from it. I realize that not everyone's story will be my story, we are all so different. I trust that God has got this and worrying cannot change anything EXCEPT to bring in fear. Fear knocked on the door Faith answered.
Hang in there.
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