calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Thank you too Jinkala for your thoughts!! I appreciate it!!
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Montana8000,
Thanks for the welcome, and glad to hear you're doing better.
Yes, I was also surprised by the multidisciplinary conference (essentially, a tumor board) that only recommended anti-estrogen therapy and not Herceptin with at least a single agent chemo. The oncologist I will be meeting with on 9/4 is part of that group, so the justification will be provided to me then, but I think I will still have other options. I am leaning towards a Herceptin-only/Tamoxifen combo as some recent research shows that this combination has synergistic effects. Doing a full course of chemo seems like over treatment for my situation, especially since my tumor receptors are so strong for estrogen-which means an anti-estrogen blocker should be highly effective.
The jury is still out on my follow-up, so keeping an open mind and looking forward to my consult with the onc, who is a highly regarded researcher. I will report back what she says as well as my plan once it is decided!0 -
Update after consultation with the oncologist at U of Chicago: she was not part of the conference, but confers that there would be little benefit and many risks of a chemo/Herceptin combination and does not feel the risk is high enough to warrant Herceptin alone. The tumors were 1.6mm in the mastectomy specimen and 3mm in the MRI biopsy, with very wide margins, but they apparently emerged from extensive DCIS.
Both the invasive tumors and the DCIS tested moderately to strong to estrogen in greater than 90% of the tested cells, and moderately to progesterone in a small amount of cells (so, weak), plus highly amplified HER2. Tamoxifen was prescribed, which I began last night, exactly three weeks post-mastectomy.
When we discussed the controversy with these tiny HER2 positive tumors, this oncologist said that most of the less favorable prognoses have been associated with the t1b category, especially in the Anderson study, and that there is every reason to expect a low risk of recurrence (she put it in low single digits) for the t1a tumors removed in my particular case.
For peace of mind, I have already put in a second opinion request with the local HER2 oncologist expert at Rush University in Chicago. I do hope for consensus as the entire team of oncologists at U of C were in agreement. I'll be back to report after the second opinion.
Wishing everyone well with their own choices and decisions!0 -
Rosamond -
I will be very interested to hear what they say at Rush. I went to both UofC & Rush and got mixed results. UofC said they wanted to get more info & testing before making a recommendation & Rush told me I should do TCHx4 without even blinking.
Best of luck to you!
Jenn0 -
I'm so glad to have found this thread today. I was diagnosed with Paget's this past spring and had a partial mastectomy for it. DCIS and IDC were found in the underlying tissue. The IDC put me at t1a. All three were HER2/neu positive at 3+. Only the DCIS is ER positive. I have since undergone rads. Tomorrow is my second meeting with my MO whom I've not seen since prior to the rads. During the first meeting she suggested 5 years of tamoxifen.
Since reviewing my pathology more closely, I'm curious why she didn't suggest Herceptin. The lack of suggestion has shaken my confidence in her. Certainly, I will bring it up tomorrow, but now I'm wondering if I should considering finding another MO. I guess, mostly I'm curious why she would not have suggested it.
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CassDugan, there is not enough research to support no chemo vs. chemo w/Herceptin vs. Herceptin alone for tumors as small as ours. Ask your oncologist to explain her reasoning.
Jenn knows this, but my Rush consult was an unpleasant, and, I felt, a pessimistic and alarmist experience...not to say that this particular MO and recommended courses of action may not be a good match for others. She recommended TCHx4 as the most cautious option but admitted that Tamoxifen only would be considered by many to be a valid approach.
Even though they were all at U of C, several MOs came to consensus that chemo/Herceptin would not offer me much of a statistical benefit. My instinct agrees, and I am taking Tamoxifen as well as working to maintain a healthy 20 lb. weight loss from this summer in order to reduce the likelihood that estrogen will fuel any future tumors. My tumors tested highly positive for estrogen.
And, I am giving it up to the powers that be in the universe.
I wish everyone all the best in their difficult decisions. May you find peace and be healthy for as long as possible!0 -
It's definitely a difficult decision. I wish it were more clear. I would say from what I've heard from others and seen by my own research, most docs say Tamox only is indicated. HOWEVER, there are some docs (like mine at MD Anderson) who strongly feel the risks of recurrence from a t1A tumor are higher and warrant chemo/Herceptin, esp if you are younger. I have to say, though, one should not take lightly the risks of chemo/Herceptin, either.
So CassDugan, your MO isn't wrong/bad/etc. The doctors do not have a real strong concensus on this decision. Most say no, I am sure b/c that is what the NCCN guidelines say.
I wish there was clearer guidance for us, but sadly, there is not.
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Some philosophical perspective for all my teeny-tiny HER2 tumor sisters:
“You may be forced to make choices without enough time or information to feel confident in the decisions you make. This is a new and permanent architectural feature of your life.
Confidence is rarely encountered and will almost never be felt in any medical context.” - Augusten Burroughs, This Is How0 -
I'm doing some research for my newly-dx aunt. My cancer is Her2- so I'm learning a lot about Her2+. I'm curious about a tumor that is 0.5 cm and was an invasive spot found within DCIS. It is stage T1a, grade 2, ER/PR+, Her2+. Does anyone know if chemo is a routinely used treatment for tumors so small? And, does the need for chemo change if a mastectomy is done instead of a lumpectomy? Of course we will discuss everything with a MO but we are having trouble getting the referral through. Thanks in advance for the help
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swearp,
I just read back further in this thread. If I'm reading right it sounds like you are off the hook for tamoxifen? In case that isn't the case I wanted to mention a thread I'm active on called "coming off tamoxifen early to have a baby". I, and the other women there, have all considered tamoxifen vs. conception and are knowledgeable about the best ways to preserve fertility while going through chemo. I hope you are doing well and your treatment is going smoothly.0 -
slg76, chemo with Herceptin is controversial for these very small tumors (< 6 mm) - so you will likely find varying opinions on whether it should be done or not. I will say since she is on the larger end of the small tumor scale, she may find more docs recommending chemo/Herceptin than not in her case.
Lumpectomy vs mastecomy has no bearing on whether chemo is needed or not. Chemo is done just in case any small cancer cells have already escaped into the bloodstream - so it makes no difference if you've done an MX or LX. If they have moved into the bloodstream already, the cat is already out of the bag, per se. Unfortunately, there is no way to know if that has happened or not - thus the reason chemo is given preventatively - to kill an possible escapees before they have a chance to grow.
If she does LX she will of course have to to radiation. If MX, she has a better chance of not needing rads. I did, but that was only b/c I had close margins after MX, which isn't all that common.0 -
Its a long time without any update from me. I hope everyone is doing excellent.
I might have pointed out before but still here is my update:
1) Back to work for past 2 months.
2) Had MX in July and my reconstruction surgery (Implants) is scheduled in Jan 2014
3) Had consulted Dr Valero from MD anderson and he does not recommend any tamoxifen or chemo, My MO at Stanford does not recommend anything either.
4) Last month I had mammogram for right breast which came out to be normal.
6) Every 6 months Mammo and MRI alternatively which I believe is pretty standard.
Again I wish everyone very a healthy life.0 -
Thanks for the well-wishes swearp - wishing the same to you and everyone else! I'm continuing to do well. 2 years still NED as of September 2011 (did BMX, chemo with Herceptin, rads, now Tamoxifen).
I'm still working on my reconstruction as I had to wait 1 year post rads, and I will need several more fat graftings to soften this hard rock on my chest. But I have had one surgery in July and am now seeing some softening starting. Yay!0 -
Congratulations Dancetrancer on continuing to do well! And to everyone else for being here as well. Though none of us obviously wants to be part of a cancer forum I know…Very grateful yesterday had my one year post diagnosis mammogram and zero issues. Am so happy!! And so very grateful!!!! 3 more Herceptin treatments and hopefully this will be it. I don't regret my decision at all to do chemo, rads and Herceptin. I have some issues (cholesterol, blood sugar,weight ) now that am trying to deal with with diet and exercise, so we'll see. They're not horrible yet, but will tip the scales to horrible, if I don't nip this in the bud by getting this extra weight off in the near future. I can't remember if I mentioned this before, but I really believe Ubiquinol is helping my heart during the Herceptin. Will continue it as long as I can buy the supplements. Ask your doctor if it's right for you. My echoes are so far looking good. Ubiquinol is the important part of coQ10. I take 200mg per day of pure Ubiquinol, not Ubiquinone. You can google it for more info, but here's a quick link: http://ubiquinol.org/ubiquinol-vs-coq10?gclid=COj5zKXf8boCFSJlMgodDAoA_A I wish everyone the absolute best!!!!0 -
Hello everyone. Great to see everyone doing fine. I had my 3 month check up last week and things look good up to now. I am nearly 2 years out (my IDC was 8 mm, did BMX, and chemo ACTH).0 -
So glad to hear you ladies are doing well! Here is some interesting info a good friend here passed on to me (thanks VR!). Dr. Slamon was involved in writing an up-to-date paper on HER2+ treatment. In it, he suggests chemo with Herceptin be considered for even the smallest tumors, including t1a. I cannot access the full article, but for those who can, I will include the link. I will also include the snippet that applies to us.
"TREATMENT OVERVIEW — We recommend adjuvant chemotherapy plus HER2-directed treatment for all women with HER2-positive, node-positive breast cancer and for women with HER2-positive, node-negative tumors >1 cm in size. We also suggest adjuvant chemotherapy plus HER2-directed therapy in women with HER2-positive breast cancers smaller than 1.0 cm (ie, T1a or T1b) with no nodal involvement."0 -
Thanks, dancetrancer. It's interesting, the careful choice of words do reflect the non-consensual nature of chemo for t1a..."suggest" as opposed to "recommend." Chemo was not suggested to me with my 3mm and 1.6mm tumors, nor was it recommended, reflecting the current state of affairs. Take my Tamoxifen every day and hope for the best! On a positive note, I have had no real SEs to speak of with Tamoxifen, and I have worked to reduce my recurrence risk since diagnosis by losing 25 lbs and working out several days a week to metabolize estrogen, as well as mindful, cancer-fighting eating and stress reduction. My 3 month oncology check-up is this week, and hopeful it will be uneventful!0 -
Rosamond, I agree. And wow congrats on the weight loss and exercise plan - woohoo! Best wishes for your onco appt.0 -
I'm (hopefully) enrolling in this trial for a Her2 vaccine, so I thought I'd share it here in case anyone is interested:0 -
Just an update...all clear at 3 month onc check-up. Next up, repeat MRI on other breast next month to check for stability.
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Great news - love to hear it!
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Also wanting to add an update, as it has been a very long time since I posted anything. I had my first 3 mo. check up since finishing herc. all was clear and good!!!
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Yay Lmont79!!!!!!!!!!!!!!!!! Love hearing all clear reports!!!! Here's to a great 2014 for all of us!
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Great to hear about all the clear reports! Wishing everyone a happy and healthy 2014!!
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Great news for those who had small tumors, were node negative, and decided to try the taxol+Herceptin regimen (which is less toxic than TCH or AC-TH). Phase II trial data in. (P.S. I did TCH b/c my onc didn't feel comfortable trying out the Taxol+H regimen without more data on effectiveness. If I were to do it all over again, I would definitely have gone the Taxol route!)
For these reasons, researchers launched a Phase II trial of trastuzumab plus the less toxic chemotherapy paclitaxel in approximately 400 patients with HER2-positive, node-negative breast cancer with tumors smaller than 3 cm. Patients received paclitaxel 80 mg/m2 plus trastuzumab 2 mg/kg for 12 weeks, followed by 13 every-three-week doses of trastuzumab 6 mg/kg. Radiation and hormone therapy were started after completion of paclitaxel. Roughly 67% of patients were estrogen receptor-positive; 50% of tumors were 1 cm or smaller; and 42% were between 1 and 2 cm (Table).
The three-year, disease-free survival (DFS) rate was 98.7%, and the three-year, recurrence-free interval was 99.2%.
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Dr. Hudis said clinicians should consider the regimen for stage I, HER2-positive, node-negative breast cancer patients. “This chemotherapy regimen is shorter and much less disruptive for patients, and generally, all around easier,” he said. “For patients with small tumors, only rarely will they experience relapse with this regimen.”
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I am HER2+++ ER-PR-. I am t1a and my IDC was 1 mm by 1.2mm. The IDC was in the middle of DCIS. I am 56 years old. I am not doing any chemo or adjuvant therapy. I saw 2 different MO and they both said no to it. One was at Mayo and one at the University of MN. They both said it was to small to treat. I felt I had gone to good medical centers. Now I am nervous because so many of you did get treatment. I am currently going through radiation and feeling a little down after reading all your posts. It is so hard making all these decisions especially when the doctors don't agree on treatment.
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rlsteadman don't feel nervous, there are plenty who chose not to do chemo and are doing just fine. Remember, it is more likely that those who chose to do treatment hang around longer on this board and have found this post. So there is some bias in the numbers presented.
Your tumor is the smallest in the t1a range, so that should give you even more confidence in your doctor's advice. AND, you are over 50, which means your risk of recurrence is lower than for someone who is younger and gets a t1a that is HER2+.
Maybe it will make you feel better to know that I at times have regrets I chose to do chemo. It put me into early menopause, which will probably give me osteoporosis at an early age. It also damaged my glucose regulation system, resulting in me becoming prediabetic. I also have ringing in the ears (which I have adapted to) caused by chemo, and this side effect is also permanent. Fortunately I did not develop neuropathy or end up in the hospital with neutropenic fever, which is a serious complication. Chemo and Herceptin are not without risk.
I'm sorry you are nervous about your treatment plan and hope this helps.
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Rlsteadman my IDC Her2+ Tumor was the same size as yours...Along with DCIS. I was in my Mid 40s when DX.I had no treatment other then surgery (a Mastectomy- so I did not have RADS)
I am coming up on my 6 year cancerversary in March!
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Woo-hoo dejaboo - SIX YEARS!!!!!!!
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Its more exciting then my Bday : )
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