calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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From Barredowl's links, "The 5-year DRFS for patients with T1a tumors untreated with chemotherapy ranged from 93% to 98%."
So my risk of invasive recurrence is 2-7%.
"The distant IR risk of T1a HER2-positive breast cancer appears quite low."
Yay.
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From Barredowl's links, "The 5-year DRFS for patients with T1a tumors untreated with chemotherapy ranged from 93% to 98%."
So my risk of invasive recurrence is 2-7%.
"The distant IR risk of T1a HER2-positive breast cancer appears quite low."
Yay.
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Hi Chocomousse:
Glad you popped in here!
Hopefully, others will be by shortly to welcome you.
Based on the three recent studies from my links, the prognosis even without chemo for women with T1a tumors appears to be very good, although these are not huge studies.
Some earlier studies had different results (discussed recently in the thread above), although they were measuring different things, etc. See third paragraph of the Introduction from Fehrenbacher (2014) for a discussion of some earlierstudies and why they may differ:
Fehrehbacher: http://jco.ascopubs.org/content/32/20/2151.full
Just want to emphasize that the sentence you quoted above from Vaz-Luis (2014) relates to all t1a patients in the study, including those who were HER2-negative (hence the range).
The text of Vaz-Luis (2014) gives this more specific information regarding T1a hormone receptor-positive, HER2 positive patients (based on 102 patients):
"Among patients with HR-positive/HER2-positive tumors untreated with chemotherapy or trastuzumab, the 5-year DRFS was 96% in T1a (n = 102) tumors and 94% in T1b (n = 89) tumors, which may be impacted by the use of endocrine treatment (85% received endocrine therapy).
Note that the large majority (85%) of the HR-positive/HER2-positive T1a and T1b patients did receive endocrine therapy, which is why I think you may be discussing tamoxifen again.
Vaz-Luis: http://jco.ascopubs.org/content/32/20/2142.long
I don't really know anything about Ki-67, so be sure to ask your oncologist about it.
BarredOwl
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Are there any studies that have assessed the IR risk in triple positive, NO, T1A's who refused chemo, targeted and endocrine treatments?
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choco,
Somebody around here might know, but even my MOs in Los Angrkes who didn't feel I needed to do chemo or herceptin felt I should do hormone therapy. As it turned out, I chose to do the whole thing . I have a friend who's a breast cancer MO in Tokyo who's coming to visit us in about 10 days before he attends the oncology conference at UCSF he told me that they're working on some herceptin only trials over there for early stage HER2+ bc but he was pretty insistent I do what my mos at UCSF suggested rather than what the guys in LA said
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Choco,
Yeah I think they will likely want you to do hormonal tx. That seems to be a given for tumors our size (according to onc's I saw and others I've heard report their stories), but the chemo/Herceptin is still very controversial.
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chocomousse, depending on the group, they may well indeed recommend what my tumor board recommended: anti-estrogen therapy in the form of tamoxifen as your tumor was highly reactive to estrogen. Your stats are almost the same as mine, except that my invasive portion was not multi-focal, and I was four years older. I'm curious to discover what they recommend. Keep us posted, and good luck.
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Thanks for your input everyone. I'll definately keep you posted.
Herceptin and Tamox may be off the table for me. I'm predisposed to blood clots which precludes the use of hormone therapy for me. One of the BS's I met with told me that hormone therapy was off the table for me because of this. My gynecologist wouldn't even give me BC to treat my fibroids and obviously, I've never used BC for BC purposes. At the end of 2013 and into 2014, I contracted a severe respiratory infection. I suffered respiratory failure and was put on life support for about 5 weeks. Due the the severe oxygen deprivation, my heart and lungs were weakened so I know I wouldn't be a candidate for Herceptin with its heart and lung damage side effects. My BS was so afraid of me going on a ventilator again during the UMX surgery that he opted for a laryngeal mask.
Has anyone opted for a single oophorectomy in lieu of hormone/endocrine therapy? Is this a treatment option for HER2+ people in our situation who can't/don't want to tolerate hormones?
I was given a chest x-ray every single day when I had the ARDS and I wonder if the exposure to that much radiation spurred the HER2+ cell mutation process. I also received 2 blood transfusions and wonder if a few cancer cells were in that blood. Just thinking out loud about where this could have come from although I know the consensus is that cancer can strike anyone irrespective of everything.
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Hi Chocomousse:
There are options to tamoxifen, and one or more of these might be considered. In any case, you may want to request that the oncologist review all options with you, and explain the basis for why some are seen as preferable to others in your particular case.
Bilateral salpingo-oophorectomy ("BSO", removal of both ovaries and the fallopian tubes) is one approach. There are also "ovarian ablation" or "ovarian suppression" methods.
A recent report summarized at BC.org describes a study in pre-menopausal women of ovarian suppression plus an aromatase inhibitor (exemestane (Aromasin)) (see link in text):
http://www.breastcancer.org/research-news/aromasin...
If one is not already in menopause, these treatments can push one suddenly into menopause, and are considered heavier hammers than tamoxifen alone. There may be other options. From reading the boards, these do not appear to be limited to HER2 positive disease.
Anyone here take any of these other approaches?
BarredOwl
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Tresjoli2 -My FISH ratio was 7.6.
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Jenn are you going to do herceptin?
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I don't know if this study is still relevant but based on the results, those in our category who receive no additional treatment after surgery and radiation have a 22% chance of local recurrence and a 14% chance of distant recurrence after 5 years. So without treatment, 77% of us would remain cancer-free after 5 years.
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What do you guys think about this statement: While it's true that some early studies found that women with HER2-positive tumors had a higher rate of recurrence, other studies haven't found that to be the case.
http://www.dslrf.org/breastcancer/content.asp?L2=4&L3=7&SID=132&CID=582&PID=29&CATID=20
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Read all these studies when making the decision on my treatment. Percentages all over the board. It's enough to make your head spin :-)
And then figuring out what those percentages mean to YOU - What treatment plan gives you peace. Tumor size is one way to look at it, tumor biology is another. My Herceptin decision was based on finding many small tumors within a large area of DCIS, and tumor cells in the sentinel node. Also, because. hormone targeted therapy was not an alternative for me.
I'm so thankful for this thread! Even though we are making various treatment decisions, but this has been a wonderful place to looks at the facts with others who are just as invested. More research is needed about us, but it doesn't seem like there is much emphasis on these tiny tumors. Hope someone is tracking our results!
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chocomousse - that's the study that swayed me to go ahead with chemo. You asked:
What do you guys think about this statement: While it's true that some early studies found that women with HER2-positive tumors had a higher rate of recurrence, other studies haven't found that to be the case.
That statement is very true. I wish it weren't...but it is...horsegirl took the words out of my mouth: Percentages all over the board. It's enough to make your head spin :-)
{sigh}
I wish it weren't such a grey area for making a decision, but it still is, IMO. What you have to do is weigh:
1) your risk of recurrence - aside from it being HER2+, how big was your tumor, how many sites, is it ER + or -, how old are you, did you have anything in the nodes or any signs of LVI, what grade was your tumor
2) the risks from treatment for your case - neutropenic fever, instant chemopause, leukemia from chemo 5 years out (small risk, but it happens), heart damage, neuropathy
3) what your risk tolerance is for all of these things - what is most scary to you - we all really vary on this - which is why it is such a personal decision
4) what other treatment options (like hormone therapy) are available to you, or not...
Horsegirl - so glad this thread is helpful to you! I did track for some time after my diagnosis, but then it just became too much for me to stay on top of who was on this thread and what happened or didn't happen to them. I'm very thankful for the newbies who help pick up the slack and respond when I don't have time...because ladies...yes we do go back to living life and not being constantly focused on cancer! YAY!!!
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Hi everybody - I was recently diagnosed this year and no additional treatment was really suggested. As you can see from my diagnosis below. My Onc said I could take Tamoxifen but also said if blood clots run in the family it's not suggested. After going through that one option he said well we will just wait and check again in December. I feel like I should have started the Tamoxifen now after reading all these post. My fear is that in December something will be wrong and then Chemo will be the only option.
When a Onc has a f/u with a BC patient what kind of test do they do? is it just blood work or more extensive?
Also I hate these expanders they are horrible. I dread going for fills because it's 3-5 days of pain.
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Glad you posted ALF1967. You're the first person I've seen in this thread with a diagnosis similar to mine who was not offered adjuvent therapy.
Hi Dancetrance. What peaked my interest is the part that said some studies were not able to link HER2+ tumor status with a higher rate of recurrence. I also read this:
Although pT1a/bN0M0 breast cancers are associated with favorable prognosis, HER2 overexpression in these patients certainly carries a worse prognosis with more distant recurrences and lower OS rates. HER2 overexpression has been associated with a DFS as low as 67%5 and as high as 100%.4 It is challenging to make an accurate prognosis of this group of patients due to the lack of robust data. Which factors contribute to the large difference in reported prognosis is unclear. A higher histological grade, negative hormone–receptor status, and/or the larger tumor size associated with HER2 positivity have been cited as possibilities. Fehrenbacher reported that T1b tumors measuring 1 cm clearly had worse DRFI compared with other pT1a/bN0M0 HER2+ breast cancers.6 Adjuvant trastuzumab has been associated with excellent survival,10-12 but the benefit attributable to trastuzumab has not been confirmed, nor has the magnitude of the benefit been estimated in a randomized trial. Given the overall good prognosis in this group of patients, the absolute benefit from adjuvant HER2-targeted therapy is likely small. Thus, the decision for treatment should entail a discussion of risk and benefit between the physician and patient, especially patients with T1b breast cancers with poor risk features (eg, tumors measuring 1 cm, high histological grade, and/or hormone receptor–negative status). This discussion could include benefit estimated using the natural history of untreated pT1a/bN0 HER2+ cancers. Moving forward, we will need a more reliable method to identify patients with high-risk pT1a/bN0M0 HER2+ who will benefit from treatment. Perhaps the 70-gene expression profile assay (Mammaprint) could be a useful tool, as the validation of this assay included HER2+ tumors, such that low-risk hormone receptor–positive tumors could be recommended for adjuvant hormonal therapy alone. However, this assumption should be tested using data from past or ongoing trials. In addition to benefit prediction assays, regimens with a more favorable toxicity profile, ideally nonanthracycline-based or even chemotherapy-free, need to be evaluated in order to improve the risk-benefit ratio for this category of patients. - See more at: http://www.gotoper.com/publications/ajho/2015/2015...
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ALF1967 where do you go for treatment.? I would seek a second opinion at an NCI approved breast center. It is not too late for treatment if you need it.
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Thanks for posting that discussion chocomousse - always interesting to see the various viewpoints on treatment for our group.
ALF - welcome to the thread. Yes, I see why your doc wouldn't want you doing Tamoxifen.
Normally, if you are ER/PR+ they consider Tamox (premeno) or an aromatase inhibitor (AI) if postmenopausal. However I would not say it is 100% advised across the board if you have had a BMX and are t1a. I believe the NCCN guidelines say "consider" it. So don't think that your onc did something wrong. There is some controversy on even that recommendation for t1a's who have BMX's (lumpectomy patients, however, will have it recommended b/c there is obvious breast tissue remaining - in BMX, the amount left is tiny).
If you are postmenopausal and are concerned about recurrence risk you could ask if an aromatase inhibitor should be considered.
Onc's vary in their follow-ups. Most just do a breast exam and check your bloodwork.
Unfortunately these decisions are all very difficult, the research is confusing and limited, and we have no crystal ball. I don't obsess on it any more...I just try to live my life to the fullest, as none of us - including noncancer patients - knows if today is our last day to live. Carpe diem!
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Tres - sorry for the delayed response, I don't usually come to the board anymore, I just happened to be looking for something the other night & saw your post. That pathology was from my first diagnosis back in 2010. I am the one that Dancetrancer mentions in the post heading:
- 7 had no treatment with dx ranging from 2007 to 2012. One has had a local recurrence 3 years after diagnosis. All others have had no recurrence yet.
I had a lumpectomy with radiation and started Tamoxifen but only took it for 6 months (I had problems with it & felt it wasn't providing enough benefit to continue - my onc agreed). At the time I struggled with how to treat it, at that time it was totally a grey area and little research had been done to show the outcome of adjuvant therapy. I got 4 different opinions from 5 oncs. If you go back through the pages of this thread you will see more of my history.
Fast forward to 2013...suspicious findings on mammogram leads to a biopsy which confirm recurrence in almost the exact same spot as the original. So I had a BMX and pathology from that showed that it was so small they had removed most if not all of it during the biopsy. So no HER2 testing was done.
I do not think that my decision to not get chemo and/or herceptin would have changed my outcome and several surgeons and MOs felt the same.
My message to you & everyone that reads this, do NOT take my story & use it in your decision about treatment. I honestly believe that I am a complete anomaly. You have to weigh everything and make the decision that comes from your heart and you have to believe in it completely. Do not second guess or look back with regret no matter what you decide, that will only chew you up & make you miserable. Focus on the positives & living your life to the fullest because you are one of the lucky ones where it was so small & it was caught early. Move forward and never look back!
All my best to you! Jenn
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Thanks and great to hear from you, 2nsJenn. You helped me to look at my own unique situation 2 years ago. Hope all on this board continue to grow in confidence of their own decisions, and to make the most of living life for today
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ALF167
Most people with your dx get treated because Her2 is aggressive.
Moffitt Cancer Ctr is NCI approved, the only one in Fl. At least get an opinion there. If they suggest treatment you can get it at your local hospital.
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Good. Then you will know you have done everything you can.
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Getting a second opinion at an NCI center is a great idea.
ALF, how big is your tumor? Chemo is controversial for > 1mm but < 6mm.
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dancetrancer No tumor, I didn't even have a lump, wide spread DCIS on LB, upon removal found IDC. The BS stated if I hadn't chosen the BiMx that I would have more than likely got it on the RB. The one choice I don't regret is the BiMx, I couldn't imagine going through this twice.
IDC = 5 mm
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Same for me, no lump. But the pathology report will tell you how big the IDC portion of your cancer was. That's what you need to know to determine treatment recommendations. You don't count how large the DCIS portion is.
You can always ask for a copy of the pathology report.
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Good news, I heard from my MO's nurse who said the tumor board recommended no further treatment due to the tiny tumor sizes. My BS, who was on the board, told them that he was confident that he got it all out. MO wants to see me in 6 months. Yay! I'm done again.
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So happy for you!!!
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