calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
-
Yay!
0 -
Hello Ladies,
Looks like I belong here.
After biopsy at age 45 (12/31/14 - way to ring in a New Year...) I was diagnosed with DCIS, grade 3 with comedonecrosis, ER/PR negative.
After lumpectomy (1/12/15 - my mom's birthday), diagnosis changed to multifocal IDC - they found four tumors, sizes are 5 mm, 4 mm, 3 mm, 2 mm. I think it is Grade 2, interestingly enough this one is ER/PR positive, and HER2+++. This is all in addition to extensive DCIS.
My oncologist won't commit to exact treatment until we get final pathology after my mastectomy, coming up on February 2nd. However, he was talking about 18 weeks of chemo, and then a year of Herceptin. He is leaning towards the more aggressive treatment, i.e. the one for tumors 6 mm and over, because even though my largest tumor is 5 mm "only", my IDC is multifocal after all and "thanks" to HER2+++, very aggressive. Also, my nodes are negative, but the lymphatic/vascular invasion is present.
While we were waiting in his office for blood test, he came back to the exam room - it so happened that he had just opened the newest New England Journal of Medicine which had an article about the newest research in treatment of my type of cancer. I believe the regimen shown in that article was a little more gentle, but at that time I was exhausted by it all and it didn't quite register with me.
Anyway, even though I am extremely scared of chemo and overall traumatized by all that is happening to me now, I do trust my oncologist completely and I will follow whatever treatment he deems best for me.
BB
0 -
Hi BB,
Welcome to the thread, and although I am sorry you have to be here, I'm glad you found us!
I too would lean towards chemo and Herceptin in your case. Sounds like you have a great oncologist, so glad you trust him - it means so much! The study done on smaller HER2+ tumors was for Taxol for 12 weeks. Seems to be developing as the standard of care we are seeing now for those of us with smaller tumors. It is much gentler than AC + TH or TCH. The study was done at Dana Farber. I would read up about it so you can discuss with your onc and understand it better. It can all be so overwhelming when you are first diagnosed! It would be worth discussing the Taxol only regimen with him to see if he thinks it may be strong enough for your case.
Here's a link to the study.
And you, along with others, should find this statement reassuring!
Three years after completing therapy, 98.7 percent of the participants were alive and free of invasive breast cancer. The side effects were generally milder than those associated with traditional chemotherapy regimens.
0 -
I wanted to check in here. I just passed my 7 year mark! My tumor was very small 1.2mm.I had a BLM. No Chemo No Herceptin
0 -
Dejaboo, thank you for the encouraging news. And congratulations! Happy to hear successful stories.
0 -
Dejaboo - congratulations!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
0 -
Hi All,
I just got my final pathology reports today, so I am new to this topic.
I am ER+, PR+, HER2+. Diagnosed with DCIS in March (age 45) and chose BMX for several reasons. They found a small amount of invasive during surgery. 0/2 nodes. I am currently 2 weeks post-op.
DCIS was 2.5cm comedonecrosis. Path report shows grade 2, my second opinion doesn't agree due to the comedonecrosis.
IDC was only 1.5mm!
Grade 1.When my HER2 results came back positive today, I did meet with the MO and was surprised he did not recommend Oncotype DX, chemo or Herceptin.His decision is based on the size. Instead, he will be placing me on Tamoxifen for 10 years.
While I am THRILLED not to need chemo or Herceptin, I am still worried. Does this sound like the right treatment?
0 -
deb....if the invasive cancer was HER 2 positive, it would disqualify you from receiving the OncotypeDX test.
If you are unsure about your treatment plan, ask that a tumor board review your case. You might also like to get more opinions because, by now, you might realize from reading this thread, doing chemo and Herception on such a small tumor remains questionable.
Good luck!
0 -
Deb - welcome to the thread. As VR said, chemo/Herceptin for the smallest of HER2+ tumors is controversial. Your tumor was quite small at 1.5 mm. If it were me, and looking back at how tough TCH was for me, if my tumor was that tiny I would not do any further treatment than hormonal. However you will have to determine your own comfort level.
If you are still concerned you can always get a second opinion to give you more peace of mind.
0 -
I had a 3mm tumor pulled out in an MRI biopsy with 1.6mm remaining within 5cm of DCIS following a UMX. I was 49 at the time. It's been almost two years. I anguished a bit over two opinions recommending only tamoxifen for 5-10 years, including conferencing by a tumor board. In the midst of pursuing a third opinion with a leave-no-stone-unturned onc, who was looking at providing CTs and MRIs to rule out every little ache and pain and post-mastectomy asymmetry as not being systemic spread, I came to my senses and decided I had had enough. It's been almost two years since my initial diagnosis. Only time will tell, but I feel at peace with my treatment being only surgery and tamoxifen. All the best. You will make the right decision for you.
0 -
so I think this is where I belong. I have 1.5mm of IDC and dcis with microinvasion of 1mm. I am strongly Her2 positive with a FISH ratio of 4.8. So my tumor size says only do estrogen blocking. But my her2 says do herceptin. MO doesn't know what do to. She's offered to put me in the atempt trial. That would mean TDM-1 and herceptin or taxol and herceptin. What the hell to do?
0 -
Tres why not get a second opinion for peace of mind? At only a 1 mm IDC, even if HER2+, it would be hard to convince me to agree to the risks of chemo/Herceptin.
0 -
Hi,
I'm doing the Taxol/herceptin regimen for 2 mm of hormone negative, grade 3, Her2+ IDC found after a mastectomy to remove almost 6 cm of DCIS. I will start by the end of the month. I've now had an initial consult with a local MO (San Francisco Peninsula) and a second opinion from an MO at MD Anderson.
The study that prompted both doctors to recommend treatment was this one: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281 (it's paywalled; good discussion here, as preciously noted upthread by voracious reader: http://www.medscape.com/viewarticle/837703).
Neither doctor made the TH regimen sound like tons of fun or anything, but said it was good protection against distant recurrence with minimal side effects. (That said, we had a loooong discussion about how I have to mention any neuropathy side effects immediately.)
0 -
cloudynight
That's exactly what my mo at UCSF recommended to me. They basically said it wasn't that bad especially if I cold capped ( no hair loss) which I did. Had I known that taking a triple dose of probiotics every day up from what I normally take would help the diarrhea ( main SE I had) once I figured that out ( two weeks before I finished)... Doh!
Maybe they said that since I'd had chemo 25 yrs ago back in primitive times and was thinking of that. The people at UCSF said they suggested that for me because of the Dana Farber report that had just come out saying that it was great for people under 1cm. I had a 7mm node negative tumor removed. Anyway Infinished chemo April 17th, now doing herceptin alone which is just fine
0 -
Tresjoli2:
The article mentioned by cloudynight is available for free via HHS at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC431386...
The article was also recently summarized in the ASCO Post at:
http://www.ascopost.com/issues/may-25,-2015/high-invasive-disease-free-survival-with-adjuvant-paclitaxel-and-trastuzumab-in-small,-node‑negative,-her2-positive-breast-cancers.aspx
(I am having trouble with the above ASCO link, but if you copy the whole thing (through aspx) and paste it in your browser, you will get there.)
Note the last sentence of the paper: "However, the study does not provide data to support the use of trastuzumab-based chemotherapy in all patients with small HER2-positive tumors, and there will be many patients with T1a disease and some with T1b disease who will decide with their physicians to avoid the toxic effects of a trastuzumab-based regimen."
1.5 mm is on the smaller side (T1a), so it seems like a judgement call on risk/benefit. I agree that a second opinion would be helpful for you in coming to a decision (and especially if your "MO doesn't know what to do"). You may also wish to confirm that the 1.5 mm IDC is the actual tissue that tested HER2 positive (not the surrounding DCIS which can differ from the IDC component).
You may find these 2014 articles of interest as well:
http://jco.ascopubs.org/content/32/20/2142.abstrac...
http://jco.ascopubs.org/content/32/20/2151.abstrac...
The full length articles are quite readable with useful tables separately reporting T1a characteristics and outcomes. If you click to get the full text or pdf, at the bottom of the page there is an option for patientACCESS at no cost I believe.
I had a 1.5 mm IDC also, but its HER2 status was not known (for some reason the sample was not able to be tested for that).
BarredOwl
-----------------------------------------------------------------------------------
Bilateral mastectomy and SNB without reconstruction 9/2013
Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Stage 1a; Grade 2 (IDC); 0/4 nodes;
Dx Left: ER+PR+ DCIS (5+ cm); Stage 0; Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).
0 -
Glad to see this thread more active! I was disappointed last year when I fit the criteria but there wasn't much activity. I had a 4mm triple pos tumor and faced the same quandaries. I and my epidemiologist partner researched the literature extensively, including the articles linked above. THere was so little data on <5 mm tumors it really seemed like a crap shoot. And since at 5-6 mm almost everyone would offer Taxol/Herceptin, I wasn't so sure I was willing to risk my life that the pathologist's measurement accuracy was within 1-2 mm! The first MO said no way, TH would be overkill for me, two others said as long as I understood the risk benefit they would be fine with it. Since, to say the least, it was not terribly clearcut I went ahead and enrolled in the Attempt trial, hoping for TDM-1 treatment. Of course I didn't get it, and ended up in the TH arm. All went relatively well though and I'm now three months out from Taxol, feeling great and happy to have chemo behind me, hopefully forever. Herceptin alone hasn't caused any trouble for me other than a day or two of mild fatigue every three weeks.
I wish all of you well that are in this difficult figuring out what to do time. For me it was absolutely the worst! Nothing in treatment was worse than the emotions of not knowing what would be best, and feeling like the oncology community didn't either. I'm glad I got enough further opinions to feel confident in my choice and I have never second guessed it. That said, I completely understand those who choose to forego chemo/Herceptin - it's also a very reasonable choice for many.
0 -
Thank you Barredowl. I had read all those papers. One of the papers you link from June 2014 issue of the Journal of Clinical Oncology showed essentially no recurrence of cancer at all in people with my type of tumor. 0. Of all the T1a women treated...none had cancer 5 years out. That was not the result for those who chose no chemo. My IDC was found in the biopsy and tested. My LX was dcis with micro invasion. I am only 40 and with two small kids and a FISH of 4.8 it's the right choice for me.
0 -
I'm glad to see more people chiming in. It is hard for me to keep up with the current literature as I am now 3.5 (almost 4, yay!) years out from diagnosis. But I do remember vividly the horribly traumatic time it was for me in the first year - trying to figure out what the h*ll to do, especially since the medical community did not concur on treatment plans for our size tumor. I hope those who read this thread will find it helpful, and I am thankful to those who recently posted with new literature. We are only as strong and as educated as our current members who keep up with the current literature. I am thankful for your input. I cannot keep this thread alive alone. Hugs and strength to all!
0 -
Herceptin was left up to me, not because of tumor size, but because I was barely her positive. I did some research and found stuff that said Herceptin also has value for smaller tumors because they may tend to have a smaller amount of her receptors based on size. I elected to do the Herceptin. It is such a powerful drug that I wanted that chance if there was any possibility it will work for me.
0 -
Tresjoli2: Glad you've come to a decision you are comfortable with!
Good luck!
BarredOwl
0 -
add me too, I was diagnosed with 5 mm IDC er/pr and her2 positive stage 1, negative nodes and clean margins at age of 45. Chose bilateral mastectomy, did TCH and have just finished my year of herceptin and am on tamoxifen now. I am so glad I found this board because as much everyone loves you , only who is the one told "you have breast cancer" knows what it means. And I am sure it is still different for everyone of us. although I am doing well. my mind is still my worst enemy.. so it really helped me finding you! if anyone knows a good practice for NOT thinking everyday about it.. would you pls share?? Already seeing a psychologist
!0 -
Welcome sissbrn! So glad you found us!
Regarding not thinking about it every day...this is classic, we all go through this. My advice:
1) It truly does get easier with time - you think about it less and less as you go back to your normal every day activities
2) Accept that thoughts will come up, probably daily, who knows for how long. Maybe indefinitely? I am 3.5 years out, and there is something probably almost daily that reminds me of my diagnosis. You are learning to live with your new normal. Your life is changed, and that's ok. But remember...it's not the thoughts that are the problem, it's what you do with them.
3) Try meditation/mindfulness. It helps you learn how to be the "watcher" of your thoughts so you can learn to be less reactive to them, stop living in the past nor the future, and focus on the only thing we all ever have: the NOW. This moment will never happen again. Ever. Don't let it pass you by by ruminating on the past or worrying about the future.
4) Don't let cancer steal your present moment. It is what it is. What will be will be. Worry will change none of the outcome or prognosis, etc., etc., all it does is steal your current moment. Don't let cancer take anything more from you than it already has. Vow to live your life differently, making the effort to enjoy and appreciate it more than you ever did before your diagnosis. I would never choose to get cancer, but since I did, I have decided to focus on what it taught me and how I can use it to make my life better. I have had to find some meaning from it.
XOXO
0 -
Good advice dancetrancer!
Not to be a party pooper, but I thought I should update my prior comments now that I know the Herceptin I chose to do has indeed caused some heart failure. I had my dose held and am waiting to do more heart testing to see what happens next. I knew Herceptin had the potential for heart toxicity, but only in a small number. Well, someone has to be in the small number! Even if my heart recovers and they let me try again with more Herceptin, I'm thinking I will not take it. For those of us so early stage it is already a crap shoot whether or not to do the T/H. Now that I know it has harmed me, whether temporarily or permanently I think I'm stopping. Hopefully 6 months was enough to lower my recurrence risk.
0 -
TT,
I hope that clears up for you! I'm so sorry to hear about the herceptin/heart issues. They did say it was such a tiny percentage, it's scary. Thinking of you.
0 -
TTFan, very sorry to hear about your heart issues with Herceptin. My heart also started showing damage on Herceptin, so I stopped at the 6 month mark, too. My reasoning was the same as yours. I truly believe 6 months should be sufficient for those with the smaller tumors. Most recover heart function, especially if caught early, so hoping that will be the case for you!
0 -
TTfan wishing you a very speedy recovery...
0 -
Thanks all - I think the odds are in my favor that this will recover, but I now lack confidence in beating the odds. Hopefully this time I will.
Dancetrancer, did your EF come back to your baseline? How long did it take? Did you have to take heart meds? I'm sorry you had this experience, but it helps to know my reasoning isn't nuts.
I am in a clinical trial and the trial MO is less than excited about this drop in function - says it's fine to go ahead with the Herceptin as long as it doesn't get even worse. I worry that she is putting the trial before my health though. A 24% drop in function sounds worrisome to me! They had previously told me a16% drop would be enough to stop.
0 -
Thanks to all for your input here.
I am newly diagnosed, age 61, and not totally familiar w/ all the abbreviations. ;-) Dx rec'd 5/29 at my local hospital after a 5/20 biopsy w/ ultrasound. Getting a 2nd opinion at Dana Farber on Monday. From my information sheet, I have T1b NO MO Stage 1A, grade 3, IDC. Size is .6 cm. Estrogen +, progesterone -, and Her2+.
I do temporary contract work that requires very long hours with great pay, but no benefits - so being out of work, and how long, and how it will affect me, including job security, is very scary.
My family - beginning on my father's side, has quite a history of BC at young ages - much of it years and decades ago. About 15 years ago 2 nieces diagnosed early - both in their 30's. One no longer with us, but hesitated in her treatment I believe. The other now in her 50's but with a recent recurrence. Believe both were Her2+, but not sure.
So I will be studying your links with interest. Am a bit numb to the diagnosis, since I was "older", and a couple others in our family missed - thought I was one of the lucky ones. and have always been really pretty healthy - and still feel that way. The good thing about all the recent work is that I truly do not have time to think about this - but do feel fortunate to know enough to look for a 2nd opinion, and finding information from similarly diagnosed women here. Comments above are both comforting and concerning, but appreciate the candor, the fellowship, and your sharing.
0 -
peg645, so sorry you have received this news. Sounds like you will be recommended the combination of chemo and Herceptin due to the tumor being over 5mm. Many people fly through treatment with few issues, and your overall healthy status may support the same for you. I encourage you to seek the second opinion. Have you met with an oncologist yet?
0 -
TTfan, my drop was not enough to warrant meds (it was less than 24% for sure), and my onc thought I was overreacting, too. I can't remember what my drop was, but, it was enough for me to say "enough" due to the small size of my IDC (3 mm) and treatment being controversial as it was. I felt the heart risks outweighed the benefits of further treatment for my particular case.
This Cochrane review (http://www.cochrane.org/CD006243/BREASTCA_efficacy...) and another study showing possible long-term heart issues (can't recall that study name right now) helped me make my decision.
I can't recall exactly how long it took for my EF to come back up to normal...maybe 6 months? But truly that is a guess. My memories about chemo and treatment are, thankfully, fading and becoming blurred at 3.5 years out.
-------------------------------------------------------------------------
Welcome, peg. You will find the standard of care for HER2+ tumors 5 mm and up is Taxol + Herceptin now. (Unless new studies have come out that I'm not aware of.) In fact, Dana Farber did a very large study on the benefits of this gentler chemo regimen for those with small her2+ tumors. I suspect that is what they will advise in your case, unless by chance you have significant heart issues to start with.
---------------------------------------------------------------------------
0
