TRIPLE POSITIVE GROUP
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Great first meeting with MO yesterday! She's undergoing treatment for breast cancer herself so she has an insight other doctors might lack. The plan is for 12 weekly chemo sessions (low-dose Taxol) plus the Herceptin. She said if I had been HER2- or just borderline positive, I may not have needed either, but my HER2 result was a very strong positive (>6; anything over 4 is considered positive) so Herceptin is a must and is only given alongside chemo. Next step is getting my port, and then we'll start treatment as soon as my surgical drain comes out.
I'm bummed that I have to have chemo, but I'm very comfortable with the decision to do it & have great confidence in my MO! I'm also very much aware of how lucky I am to only need the Taxol & not stronger chemo drugs, and I draw a lot of inspiration & courage from the stories & information shared in the BC forums & Facebook groups from others who have been through this & worse! Love & light to you all!
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Sorry you are here Beachgirl. This is a great bunch of women that will give you help and support.
Me? I opted for skin saving mastectomies. I would look at my breasts and hate them once I got my diagnosis. I have no regrets with this decision. My Surgeon said he would cut and leave as much as possible but could never say he got all the cancers. That scared the crap out of me. Also, I could not have symmetry if I had not done the mastectomies. I wanted to feel great about my body when this was over.
I LOVE how my Plastic Surgeon has given me the breasts that I always wanted. They are soft, tight, upright. All I am waiting on are my 3D nipples. I do miss my nipples A LOT! But my cancers were too close to keep them. My shirts fit better than ever. I was big (38G). I would walk into a room and my boobs went in first. Now "I" walk in the room and people see me and not my boobs. I measure out 32DDD today. My implants are silicone 600cc each, 6.1" moderate not high projection. Go to Whippetmom's forum at BCO for the BEST advice on implants if you go that route.
Don't get mt wrong as happy as I am today, I cried for months about amputating my breasts. It was a hard decision but one that got my cancers out of me. I still cry from time to time over having cancer and that is normal. I never thought it would happen to me.
I still have breast sensation which is something you must discuss fully with your Surgeon and Plastic Surgeon. I know I am fortunate.
I think Oncologists think they "run" the cancer patient's life. My Primary Care is the "hub" of my care. The others (GYN, Surgeon, Plastic Surgeon, Oncologist, Physical Therapist, Counselor) are the spokes. My husband and I consulted with all of them before anything happened and got their input.
Before my mastectomies, I went to physical therapy (PT) to build my upper body. Only my Primary Care was on our side with this decison. After the mastectomies I went back to PT. I had lost a good deal of strength while recovering. Going to PT upfront was a great decision.
My Oncologist "suggested" that he would do chemo and then I could have my surgeries. We said no. Surgeries first (mastectomies with immediate tissue expanders) and then chemo. Once I was just on Herceptin, I had reconstruction and a robotic hysterectomy. Again, my Oncologist suggested waiting but I said no. I scheduled these during a Federal Holiday weeks (only 4 work days) so I could still schedule work if I wanted.
Here is my point, long after these medical people are out of your life you will have your body and health. They will be gone. You will be the one dealing with the decisions made. My husband and I wanted to be the ones in charge of all those decisions.
I also know that if I had waited, I would have felt my breasts every minute of the day looking for a change!
I did finally get the Mammaprint test which my Oncologist said would not make a difference. Well, it did. He gave me an 85% chance for no recurrence based on my diagnosis and the general population like me. My Mammaprint gave my 94.6% for no recurrence. If your insurance covers this, I would encourage you to get a genomic test as soon as possible.
In looking back, I wish I had pressed to be in a clinical trail for Perjeta. It probably would not have made a difference in my non recurrence but I wish I had studied more about "newer" treatments before I started chemo. That is my only "look back" regret.
Finally, keep wise on your mental health. About 80% of all breast cancer patients suffer PTSD. My Oncology Team has offered anti depressants time and time to me. I ask them who is qualified to make a diagnosis of depression and there response is "most everyone who has cancer has depression." I have PTSD not depression. There is a difference and it is treated differently.
They also said "everyone gains weight on chemo" and other such things. I think a woman must be informed and challenge these "everyone does this" statements. Again, it is your body. Don't let anyone treat you cafeteria style or one size fits all. Demand what you want and what you want to live with for the rest of your life. We fired my first Primary Care. She could not handle being the hub of my care.
As PatinMN shared, my husband also did gel cap therapy for me and I loss (maybe) 40% of my hair. I only loss that much because we thought "freezing" the caps meant in the freezer. We learned to use dry ice on them!
Best wishes. Someone told me that they would not wish cancer on anyone but they would not take their cancer journey back. I didn't understand what they were telling me at the time but I do now. I am a better person today and I owe it to my cancer journey. My husband told me one day that he did not know he loved me this much. I would not go back. I hope you can understand. Cancer sucks but you can take this and make it positive journey.
I hope this helps you and answers your questions.
Again, best wishes and as with all the women on this forum, I will keep you in my prayers.
Vicky
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I miss the old me too. I wish the AI's didn't make me feel so old and creaky. I want intamacy to be as pleasurable as it used to be. I’m upset that we all are recommended these same treatments, when we know that for some of us, surgery alone is all that was needed, there's just no way of knowing who. I may be enduring these side effects for no good reason, maybe my cancer was never recurring or maybe it is and no treatment is stopping it. We now live in a very unpredictable circumstance and it is stressful.
But...we live. That's what I try to focus on. The week I was dx I was an emotional wreck, but something happened that week that changed my perspective. A woman exactly my age, was jogging down the street, hit by a car, and killed instantly. I did not know this woman, but according to the news reports she had a family and a successful career. It was tragic.
So while I was sitting on my couch feeling sorry for myself because I had to do some treatments that would keep me alive, she was gone in an instant with no hope of survival. I am three years out from dx and I still think of her and pray for her family when I experience another milestone in my life like my daughter's wedding, the birth of my grandson, or advancing at my job.
At sometime in life everyone faces burdens and challenges. I don’t know why ours is BC and not something else, but there are far more debilitating diseases. I may be broken, but I can still walk, talk, see, hear and take care of myself and my family. For that I am grateful.
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What a wonderful post. I cried joyful tears when I read your post. You really captured how to put this journey in perspective.
Thank you, again.
Vicky
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What a wonderful post. I cried joyful tears when I read your post. You really captured how to put this journey in perspective.
Thank you, again.
Vicky
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Hey Coach - I'm curious about your Mammaprint. How did you get your doctor to run it and did they also do Blueprint? Did the recurrence score include information about the factors that determined the score?
I see my MO later this month but I emailed her about Mammaprint and she nixed the idea because of my being Her2 positive. What I really want is to know, for absolute sure, is my subtype so I intend to push for this at my appointment so any arm-twisting pointers you could share would be greatly appreciated.
And regarding the recurrence score - does that mean ever or within a specific time frame and was that with specific treatment or without treatment?
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Hapb - From what I've read, subtypes are based on different characteristics of BC and can determine treatment needs. Combinations of Her2 positivity and negativity, the degree of ER and PR expression plus K1-67 score are some of the factors that determine subtype. Luminal A, Luminal B, Basal and Her2-driven are the main subtypes and there are additional grouping within some of the subtypes. Triple positives fit into the Luminal B subtype because of ER/PR expression, at least on paper.
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coachvicky, could you please explain what was the difference between those two Mammoprint tests? Are they two different versions?Cherry
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For Mammaprint, ER+ and Her2+ patients usually fall into either the Luminal B-like or ERBB2 (true Her2+) subtype, Luminal A subtype include fewer who test Her2+, as Luminal A tumors are usually low Ki67% and lower grade. Here is a sample Mammaprint report, and Blueprint reports. Because Oncotype Dx is not available for Her2+ patients, and chemo and targeted therapy is somewhat of a given for Her2+ patients, many insurance companies will not pay for a Mammaprint - which, when I had it done in 2010, was a $5K test. If you have Oncotype Dx done (non Her2+ patients) and fall into the intermediate area, I understand Mammaprint will do the test for $500 cost to the patient, but I am not sure what the situation is without that scenario - maybe coachvicky can tell us.
http://www.agendia.com/wp-content/uploads/2013/05/AGE594_US_Mamma_Under61_lowV2_UPDATED.pdf
http://www.agendia.com/media/BluePrint_HER2.pdf
http://www.agendia.com/media/24Feb2015_BP-Luminal-ROW.pdf
This is an interesting article regarding subtype and effective treatment, which also included subtype percentages of Her2+ patients - from the article it appears for this sample that 7% Luminal A, 20% Luminal B, 14% basal-like, and the majority remainder were ERBB2 or Her2+ subtype.
https://academic.oup.com/jnci/article/106/8/dju212/914782/HER2-Positive-Breast-Cancer-Intrinsic-Subtypes-and0 -
From the Agendia website:
MammaPrint can help you answer the most important clinical questions for the care and management of breast cancer patients:
- Who is at risk for recurrence?
- Does MammaPrint help identify which patients may safely forego chemotherapy?
- What is the optimal treatment for each patient?
The BluePrint + MammaPrint allowed determination of a patient's potential level of responsiveness to neoadjuvant chemotherapy more accurately vs. IHC/FISH, with better correlation with long-term clinical treatment outcomes.
From BCO: The MammaPrint test looks at the activity of 70 genes and then calculates a recurrence score that is either low risk or high risk.
I was uncertain about my treatment and wanted to better know my risk, non recurrence, and if I really needed all that chemo. Once I saw that my non recurrence was 94.6% if I finished all my treatment (including Arimidex), I had the confidence that I could beat cancer and I would finish all treatment. Up to seeing that 94.6%, I really did not have confidence anything was working. I really thought I could have stopped with just the surgery. I know better now.
I didn't think the BluePrint would tell me more and, frankly, I was tired of wearing down my Oncologist. I think he did the MammaPrint so I would stop nagging him about it.
Lita19901, I sent you a PM. Mammaprint is a 5 year predictor and gives a risk factor.
Special K. My insurance was billed $4,200 for the MammaPrint. The BluePrint is an additional $3,900. Anyone can call the company and they will walk you thru what to do and the costs. One rep told me not worry about the price. He said if my insurance woudl not pay they would work with me. I asked why? The rep said because we are a compassionate company and we want you to live. No joke. He really said that.
Hope that this helps.
Vicky
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Hap - It's important to me because of my preexisting neuropathy. If chemo or other treatment becomes too difficult I need to know what ending that aspect of treatment means in terms of recurrence and/or survival. Knowing my subtype gives me more information.
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If one is triple positive and does neoadjuvant TCHP and has a complete PCR, is there any benefit to obtaining a mammaprint and blue print?
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coachvicky, If your Mammaprint was once 94,6% what is the number of 85% is about? I am confused. Does it mean that you have 85% now and 94,6% when you are done with all Arimidex after a certain number of years? Cherry.
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Cherry,
My oncologist gave me an 85% chance for non recurrence based on my type of cancers and the general population with my cancers.
The MammaPrint studied my breast tissue and that's where the 94.6% came from. It was far more accurate than what my oncologist gave me.
Vicky
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SpecialK - could you please post the article title? The link doesn't work for me
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coachvicky, thank you for the explanation, when I red your post it sounded like two Mammaprint tests to me, Cherr
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Hap,
The MammaPrint results identified me as high risk.
If I finished my chemo and my oral estrogen blocker, I have a 94.6% opportunity for no recurrence.
Make sense?
Vicky
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Hap,
It did not specify a treatment plan. Only that with chemo and finishing all treatment what my non recurrence would be.
Vick
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Vicky, I may have missed it in the emails, but what treatment plan did you follow? Chemo or no chemo? I was interested in doing BluePrint as well to get the subtyping in case I had the one that responds better to hormones than to Herceptin, but my MO said that since I was such as strong positive for HER2, I should go with Herceptin & Taxol. Now I'm wondering if I should get the test and/or a second opinion.
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lita - I replaced the link in the other post, but here it is as well. This link should work, but this is from the Journal of the NCI, Her2+ Breast Cancer, Intrinsic Subtypes, and Tailoring Therpay:
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hap - you aren't likely going to see a subtype written anywhere unless you have genomic testing done. Some oncologists will hazard a guess about your subtype based on other pathological criteria, such as Ki67%, grade, and percentage of hormonal receptors. An example would be a low grade, node negative, strongly ER+ but Her2- is likely a Luminal A. Here is a breakdown of molecular subtype - St. Gallen, which is who did the first subtype classification. Subtype definitions can vary a bit by source.
Luminal A - ER+ and PR+ at least at 20%, Her2-, low Ki67%
Luminal B - ER+, PR+ at less than 20%, Her2-, high Ki67%
Luminal B/Her2 - ER+ and/or PR+, Her2+, any Ki67%
Her2+(non luminal) - ER-, PR-, Her2+, any Ki67%
Triple Negative - ER-, PR-, Her2-, any Ki67%
I am classified by Mammaprint as ERBB2 subtype, so Her2+, but I was strongly ER+ and weakly PR+, and a crazy high Ki67% - so I fit the St. Gallen model of Luminal B/Her2+
I think it is important to note that none of the current genomic assay tests will direct you to a specific chemo regimen that works best on your tumor - we are not yet at that level of personalized medicine. Almost all Her2+ (those that test truly Her2+ on IHC or FISH) will come back from Mammaprint as "high recurrence" and the recurrence score will be based on finishing "treatment" whatever that consists of - non-specifically.
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SpecialK - The article was very interesting - thanks so much for sharing it!
And your Mammaprint results of HER2-driven vs placement in the Luminal B subtype is exactly the reason that I want those results. In various studies I've read the recurrence/survival stats are different for each type. Ostensibly I'm Luminal B because I'm highly ER/PR positive but it's also possible I'm HER2-driven or even Luminal A.
It feels like we're on the cusp of so much knowledge about breast cancer but not close enough to let early results and hypotheses change treatment. But I imagine this is the case with much of medical science at any point in time.
'Tis a conundrum.
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Coach - I'm curious - how do your Mammaprint results compare to Predict UK?
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HapB - this is an example of how subtypes are being studied to help determine treatment needs:
In case the link doesn't work, the title of the article is "Distinct triple-positive subtypes identified in breast cancer." It was published in the "Oncology Nurse Advisor" and written by Kathy Boltz, PhD.
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I did Taxotere, Carboplatin, Herceptin for 6 rounds August thur December 2016. Then Herceptin for the rest of the year thru August 2017. 18 rounds total. Finished 14 August.
Lita19901 I don't know about the comparison. Maybe Special K can give insight. She is the expert on this. Way beyond my knowledge.
Vicky
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Coach - sorry, I was assuming you had plugged your information into the Predict BC calculator website. It's really fascinating, at least to this statistic nut.
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Hap - My MO's goal is to kill the cancer so it doesn't kill me. My goal is to stay alive while still being able to have a life after treatment. Sometimes these goals are in conflict.
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SpecialK, I have now red HER2-Positive Breast Cancer, Intrinsic Subtypes, and Tailoring Therapy and I do not know whether I just know so little about it or if my mind does not work properly these days, but what was the statement? How much Her2+ do you need to be so you can be classified as Her2-E? I double checked with another oncologist, my score (IHC) is 7, 13,8 number of copies. Am I Luminal B? Or am I overexpressed Her2 even though I am both ER/PR+? Do I benefit from hormonal therapy? Trastuzumab? And what does mean: it is quite possible that copy number could drive the expression of genes that modify trastuzumab efficasy? Just how you interpret it for example.
I mean I am writing all this down because I will meet a new oncologist on Wend but in case I have better understanding I will be able to pose the correct questions.
Thank you in advance, Cherry
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Lita, is it possible to be Luminal A if you are Her2 positive?
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lita, I red the article and it says: The study noted that combining trastuzumab and pertuzumab for dual HER2-inhibition improved pathological complete response rates in all patients, except patients classified as basal-type by BluePrint and as HER2-positive/ER-negative by IHC/FISH.
Why would Herceptin work better for those who are ER+/PR+/Her2 compared with HER2-positive/ER-negative? I thought it was the other way around.
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