HER2+ and no chemo for early stage?
Is anyone out there ER+ PR+ and HER2+ and didn't have to do chemo?
When I was diagnosed with a small tumour (1.7cm), I was very confident, knew instantly i want lumpectomy followed by radiotherapy and then live happily ever after for the rest of my life... it went well, till my breast surgeon (best in my country) told me "you need chemo" because of the HEr2+.
Histopathology report shows: Tissue consists of a central nodle of malignant mammary glandular tumour tissue measuring 17mm x 15 mm. The tumour cells are small and cuboidal and form tubular structures and solid cords. The lining cells demonstrate prominent small central nuclei, generally hyperchromatic. Nucleoli are single and small. Cytological atypia is minimal. Mitosis number about 4-5 hpf and bizarre mitoses are not seen. An intraductal compnent is observed and is low grade. There is no lymphatic permeation and margins are free.
I think it was the word chemo that scared me! From something simple, i feel it i now more complex and finding it difficult to make a decision of chemo or no chemo. Herceptin is a possibility too (but out of my budget).
I would love to know from others out there with ER+ PR+ and HER2+ at early stages and what was your doctor's advice and how are you doing now. Please share.
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Mine was 11mm x 6mm x 7mm and my oncologist (one of the top oncs in Australia) recommended chemo and Herceptin. Usually if it is under 5mm, then the question arises but anything over 5mm TCH (taxotere, carboplatin and herceptin) is the standard treatment. Herceptin is probably the most important of the three.
I hope this helps - you do NOT want to mess with HER2+ve cancer.
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My diagnosis was early stage (1.5 cm) node negative triple positive breast cancer in 2010. I went to Mayo Clinic for treatment recommendation and there was no question for them that I should definitely do chemotherapy (Adriamycin, Cytoxin and Taxol). I had surgery, chemotherapy, Herceptin and Tamoxifen. I've been cancer free since my surgery. I had to cut back the dosage and remove one treatment of chemotherapy, due to side effects, but thankfully I was able to receive a full year of Herceptin. I am so thankful for the Herceptin, as I believe it has made my HER2+ diagnosis much more manageable. Take your doctor's recommendations very seriously. A breast cancer diagnosis is very overwhelming at first, but it does get more manageable as you start getting decisions made and start down the road of treatment, whatever you decide that to be. Best wishes to you!
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Thank you heaps Faye33 and suzieq60! Your words are encouragement to me! Thank you for sharing the chemo drugs used too. I am still hoping to be able to bypass it, though have been told by a doctor friend that I best follow the advice of my breast surgeon (as she is the best in the country) though i would still need find an oncologist to work with me!
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It's coming up to 5 years for me in a few months - you really cannot bypass it - listen to the doctors
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Kay - we are lucky here - Herceptin is paid for by the government - my private health insurance paid for the rest.
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hi there. My oncologist said that there is NED after my surgery in March and said that treatment would be 3 rounds of FEC then 3 rounds of taxotere with herceptin. The herceptin will continue for a year. I will also be given tamoxifen. All if the specifies of my chemo ate in my profile if you'd like to see
Round 1 was two weeks ago from this wed. So far can't complain
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I must admit that I am scared to go on herceptin. Seems like the side effects are mostly bone pain. My gf is a bc survivor and was also on herceptin for a year and after being done for several years still has some bone pain
Well life is a roller coaster!!
:-)
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Footballnut - I did a year of Herceptin, and it really was pretty easy! It was the last four or five treatments that were harder, and that was because I get diarrhea with any meds, and I was starting to get tired with each treatment. But that could also have been from the Arimidex I was on at the time too. The AI's can cause bone pain, I'm not sure that Herceptin does.
It really was a piece of cake, well compared to chemo it was lol. Herceptin on its own is nothing to be scared of, so long as your heart keeps up and that will be tested every three months.
Yensmiles - I wouldn't even consider not doing chemo and Herceptin with a triple positive dx. If you are having financial difficulties in finding the money for the tx, there must be something that can be done. Herceptin is literally a life saver for women who are HER2+.
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Footballnut,In part due to the sequence involved in the development and approval of the use of trastuzumab, it is harder to accurately attribute its protective value, in particular considering that most very early stage patients would not recur without chemotherapy yet the standard recommendation includes chemotherapy (in order to protect the minority).
I had chemotherapy in 2002 but did not receive trastuzumab, because it was not yet part of standard treatment at the time. A close friend of mine who was diagnosed after the trastizumab trials were completed but very early in the standardization of treatment around 2004 chose not to do chemo, and successfully took trastuzumab alone.
Neither of us have yet recurred.
Best wishes with your personal decision,
A.A.
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AlaskaAngel, so good to hear that you've passed the 10 year mark!!!
I was using the survival projection tools online (Adjuvant/Predict) and for many of us with Stage 1, the survival rates are about 90% even without doing anything post-surgery.Football nut, I read your profile and it's a shame that despite your early suspicion it wasn't diagnosed earlier. Your diagnostic date was the same as my biopsy date (and birthday!!!) Reading all the positive comments here give me hope and encouragement and I hope the same to you too!
Trish, it's good to hear that herceptin was easy!
Kayb, I'm Malaysian and while treatments at government clinics/hospitals are very cheap, there is only one government hospital I've heard which gives out Herceptin, and I've been told I'm not a likely candidate because I will be asking for it as an adjuvant treatment. Also referrals to government hospitals takes time.. and waiting list can be months long.. currently, in one of the teaching hospitals (universitylinked, semi-government), where I'm seeing the oncologist (or rather oncologist-wanna-be), I've been told that I would need wait at least 3 months for the radiotherapy because of the long queue of patients. I'm shocked! I can afford to do radiotherapy in the private sector using insurance money (when it comes) but for Herceptin, I'd literally need to sell a house! It cost RM100,000 for Herceptin alone. So plus consultant fees and chemotherapy, and later radiotherapy, it would be probably be closer to RM150,000. And I am seriously thinking about that house now.
Glad to hear that US and Australia has such a good health care system.
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Yensmiles,
I appreciate your post in particular, because it explains so well why it is important not to overtreat early stage as a rule of thumb, since not everyone has equal access. Thanks for reminding us all, particularly in behalf of others who also do not have it and who are so falsely terrified that if they can't get it, they won't make it.
A.A.
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Herceptin costs $75,000 here - we are so lucky it is paid for by our government - at least they appreciate the importance of it's benefits.
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oh gosh, that is pricey Suzie60! I watched this Australian programme the other day on genes and breakthroughs in cancer! Wishing that part of research will speed up and there'd be an easier and faster cure!
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I LOVE you for that wonderful piece of information Kayb!
Have emailed one of the doctors at the semi-public hospital I'm consulting with, and will also call Roche when it's daylight here in Malaysia. Thank you! 
Coincidently, I've just read that since late 2013, England has been using the injectable version.
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That is one reason why keeping an eye on the European organized breast cancer reviews and recommendations is important. There is a tendency for those in the US to focus myopically on just the US cancer treatment standards, which are of course one organized approach based on research. Yet valuable research is still occurring elsewhere and moving on, and allowing other logical conclusions and recommendations to go forward elsewhere. Some things about the inter-relationships between government and the entitites that do research and those who produce the drugs are getting in the way for all of us.0 -
kayb,In short, YES. NOT being blindly and determinedly biased (and dependent) in favor of or against either U.S. or other entities just because of where one happens to be, is worth considering.
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Still worry about my decision not to do chemo and Herceptin. 3 oncologists didn't feel my 1.2 mm invasive cancer would get enough benefit from the treatment or felt it was to small to treat. I did the Komen Race For The Cure last week. It was emotional for me. I saw a lot of survivors but there were a lot of people walking in remembrance of those who lost their battle. This week it has been hard and I am second guessing everything.
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Rlsteadman - I can't believe 3 oncologists thought you would not benefit from chemo and Herceptin - you should have gone for a fourth opinion.
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Suzie, if Rlsteadman had gone to 10 oncologists, probably 9 out of 10 wouldn't have recommended chemo or Herceptin. In truth, I am surprised that any oncologist would recommend chemo and Herceptin for a 1.2mm invasive tumor. That is barely larger than a microinvasion, and I can't think of a single instance where these treatments have been recommended for someone who has an HER2+ microinvasion. I suspect that when these treatments are offered to women who have such tiny T1a tumors, and particularly when the protocol is not a tested or proven protocol (i.e. lower doses), the rationale is to help the patient feel that she's getting the best possible treatment - even though there is no evidence that the treatment is necessary or that the protocol will be effective.
Treatment guidelines suggest that chemo and Herceptin be considered when an HER2+ tumor is 6mm in size. Given the aggressiveness of HER2+ cancers, I completely understand why many oncologists recommend these treatments for smaller tumors, and I think these days most women with 5mm and even 4mm HER2+ tumors receive these treatments. But a 1.2mm tumor is 1/5th the size of a tumor where chemo and Herceptin should be considered, according to current treatment guidelines, which is based on the available research. The research up to this point on Herceptin and chemo for HER2+ tumors has shown a benefit for T1b tumors; there is virtually no information about T1a tumors and particularly, the tiniest of T1a tumors. The only info we have about the tiniest of tumors is that the survival rate is high.
In our discussions here we tend to put all T1a tumors together in the
same boat, but there is a big difference between a 5mm or 4mm tumor and a 1.2mm tumor. A small T1a tumor is more similar to a microinvasion and a
larger T1a tumor is more similar to a T1b tumor. Treatment recommendations generally reflect that.0 -
Sorry girls - I read it as 1.2cm - my bad
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Beesie and kayb- thanks for the posts. I know that treatment for these tiny invasive tumors under 5 mm isn't usually recommended. It is just hard when I keep reading about all the people who are getting chemo and Herceptin when their IDC is just a few mm larger than mine. At the Race For The Cure I didn't feel like a survivor and I'm not sure I ever will. I don't know how people get their life back to normal and feel so positive. I have a friend who's breast cancer just came back after 11 years. I think that has really scared me. I am glad I can come here for support.
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Rlsteadman, I wish I'm in your position, though any form of tumour isn't easy. I wish the doctors here will tell me that it's okay to just do radiotherapy after my lumpectomy.. however, that isn't the case. One oncologist in a private hospital has recommended the works, my breast surgeon and a significant person in breast cancer research thinks that for my risk profile, it's not worth the money, and the two studying-to-be-oncologists doctors I saw at the oncology department in a semi-government hospital thinks it's up to me, though every gesture and word they say points to "forget it." My main anxiety now is the effect of chemo.. is it worth it? All the side effects (some which might be irreversible). Secondary to that is the cost. Chemo alone (FEC x6) will cost me just RM300 in a semi-government hospital, RM22,000 in a private hospital. The whole works of HErceptin with concurrent chemo (TC x4) and later concurrent radiotherapy will cost at least RM150,000-RM200,000 in a private hospital. ... arghh.. worse case scenario is I sell a house, though i'm more afraid of chemo side effects than I am afraid of being penniless. Money can be earned again.. total health.. am not too sure..
Now I'm feeling particularly healthy.. it's already 3 1/2 weeks after my lumpectomy, wound healing very well, today was my first day at work and besides not being able to carry heavy stuff, I feel somewhat "normal."Rlsteadman, I hope being in this chat will continue to encourage you. I feel so touched by the many people here who are optimistic and continue to live life to the fullest. Maybe it's really a tremendous blessing not to have chemo + herceptin.
Kayb, the particular trial for herceptin is over in Malaysia.. Roche didn't get back to me (the pharma wing going through an office move), but I got information from the doctor I consulted with at the semi-government hospital, and he was around during the trial about 2 years ago, and the jab was well-tolerated by participants here.. unfortunately it is completed in Malaysia. I think the "recruiting" indicator is still there because it involves multiple country, some of which has yet to commence the trial. Thank you heaps for just being here and sharing such wonderful information and giving hope Kayb!
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Yensmiles, I am also triple positive, and opted for a lumpectomy followed by a traditional radiation even though I had several choices: during surgery, or a new course of treatment, I think a Canadian study, using more radiation for a shorter four week span.
I have invasive ductal carcinoma.My tumor was 1.6 cm, lymph nodes and margins were clear. My tumor on the Nottingham Histologic Score was 7 which is Grade 2. I have had my fourth treatment this week with no serious side effects. Maybe the reason I had to have chemo was the tumor grade, I am not really sure.
I am receiving treatment at UF Health in Florida. They are a teaching hospital, and are open to all new protocols European or otherwise, so I am very fortunate in that regard. My oncologist recommended Taxol plus Herceptin for a 12 week period followed by 9 months of Herceptin. I will also need hormone therapy. This is a fairly new drug protocol based on research that was presented at the Breast Cancer Symposium in December. It is a milder regimen than some of the previously prescribed drugs, but even though the study was small, the results were compelling.
And yes, I do have the drippy nose! Just comes with the territory.The best of luck to you on your drug research. I think everyone with a cancer diagnosis doubts the decisions that they have made for treatment. I know that I do. I am concerned that my treatment will not be aggressive enough, but I have avoided many of the side effects of the stronger regimen.
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Hi Floridagirl, thank you for sharing!
It could be the HER2+ that requires chemo.. for me, that's the case, everything looks okay, except for the HER2+ and a friend who was diagnosed with a similar sized tumour last year, had lumpectomy and only requires radiotherapy because she is HER2-.
Thank you for sharing your side effects too.. i think Taxol is similar to a slightly newer drug called Docetaxel (same family: Taxanes) and hmmm.. i might actually ask the next oncologist i see on whether just taxol + herceptin is okay if Taxol is relatively mild. HaHah, while you're concerned that your treatment will not be aggressive enough, I am afraid any kind of chemo is too strong...
A friend died of chemo complications earlier this year.. I was meaning to visit, and didn't even get a chance to, as she suddenly passed on, despite looking good and cheerful on facebook photos..
Perhaps that adds to my fear of chemo. 0 -
kayb,I believe you do desire to provide help to those with HER2 positive bc who want to understand its benefits. But it should still be pointed out that once again, the emphasis on the benefit of including chemotherapy is not demonstrated. The article stated:
"A decade of data continue to demonstrate that adding trastuzumab (Herceptin, Genentech) to standard chemotherapy in women with HER2-positive breast cancer improves both overall and disease-free survival.
Furthermore, the benefits conferred by trastuzumab are not waning over time."
That statement does not provide any clear information about the value of adding chemotherapy. It only says that it was part of the treatment and that the chemotherapy wasn't very successful in treating HER2 positive patients, and the statement implies but does NOT prove that adding chemotherapy is helpful. They are not stating that
"A decade of data continue to demonstrate that adding standard chemotherapy to trastuzumab (Herceptin, Genentech) in women with HER2-positive breast cancer improves both overall and disease-free survival."
Unfortunately, the value of the addition of chemotherapy remains unclear -- especially when weighing the knowledge that chemotherapy has risks that go beyond those of trastuzumab (Herceptin).
When it comes to patients who cannot access the trastuzumab in addition to chemotherapy, whether for cost reasons or complications they have, or the complications that adding chemotherapy can cause, the manner in which the benefit is implied but not proven results in confusion. Patients who might at least get some benefit with trastuzumab when used without chemotherapy are then not being honestly assisted, by promoting the biased language that is being used to continue the practice of including chemotherapy without proving that it is necessary. It also fails to consider that for a percentage of patients, the chemotherapy itself can cause cancer.
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Yes - Again, I agree with you. It might be true that adding chemotherapy provides some benefit, or it might not, or it also might provide less benefit.However, by stating study conclusions in a manner that implies there is added benefit by using both treatments, it fails to openly admit that we do not know whether using both treatments is of more benefit, no added benefit, or less benefit than using trastuzumab alone.
Don't we deserve that much direct honesty from those reporting the study conclusions?
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AA... As you know and newbies may not be aware, the way the initial Herceptin clinical trials were done, needed to be ethical. At the time, the Standard of Care was chemotherapy. In order to conduct an ETHICAL trial and accrue enough participants, the trial had to offer chemotherapy. So, patients were randomly assigned to either chemo or chemo AND Herceptin. Had the trial not been designed that way, it would never had been approved. We should be thankful today to the researchers who designed the study and more grateful to those brave patients who agreed to participate. Furthermore, today there IS a clinical trial for older patients that is studying offering them JUST Herceptin. The trial is very formitable and welcoming. Unfortunately, only time will tell if enough brave patients will enroll and it will be decades before we know whether Herceptin WITHOUT chemo is a safe alternative for older women and then may be considered for younger patients.
AA, I'm sorry that when you were diagnosed you were not offered Herceptin and that you have been critical of how clinical trials are conducted. However, I would like other sisters to understand that these studies today are trying to be done as ethically as possible. And that unfortunately means that we may not know for many years to come if Herceptin can be given alone. Are there physicians doing it outside of clinical trial? I'm sure there are some. Are they doing it in their patients' best interest? Only time will tell. But in the meantime, I'm glad that most clinicians are following Standard of Care protocols. They are there to protect patients, whether you think it is wise or not!
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kay...I was writing a reply that crossed yours.....
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Hi VR,My belief is that study results should indicate clearly what the study demonstrated, and in situations such as this it would be far, far more ethical to provide a clear disclaimer indicating that the value of including chemotherapy remains unclear.
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Kayb,
Again, I agree with you, the information for patients about ovarian ablation should be more frequently provided.
As well, it is not known whether chemopause is a major factor in reducing recurrence rates when chemo is given in addition to trastuzumab, would could make trastuzumab less effective for pre or perimenopausal patients when trastuzumab is given alone. But in all honesty, that lack of proof as to whether other forms of OA plus trastuzumab would be equal to chemo plus trastuzumab, should be openly stated.
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