calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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Thank you for your input, Toastiecat. I've hardly been sick a day in my life so this has been tough for me to wrestle with. I have a strong family history too, but I did test negative for BRCA1 and 2 gene mutation. I guess 2mm seems like nothing to a lot of people. But it's still cancer and Her2 positive at that! I will see what the tumor board says next week. I hear that it involves at least 20 or so doctors, so that's a lot of 2nd opinions. Thanks for replying to me and letting me know your thoughts.
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I had a focal microinvasion with my DCIS and was HER+++, I was told by my first oncologist he recommened a year of herceptin and optional chemo for 6 months. I was so upset because I thought I had caught it early had the mastectomy with no lymph involvment so I got a different opinion from Dr Anna Beck from the University of Utah and she didnt recommend I do anything else but my 6 month check ups with her. The risks would have outweighed the benefits. My surgeon had a roundtable discussion with a pathologist, radiologist himself and another oncologist who agreed with Dr Beck so I went with the majority.
I am a year and a half out and have gotten all clear testing and clean check ups, I feel good and am content with the decision. I sometimes let my mind wander but the more time passes the more I content I become.
It is a decision only you can make but getting different opinions from good Drs will help. Good luck
I am also BRCA- and have no family history of breast cancer.
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duckidee - sorry you have to be here, but glad you have found us and welcome to the thread. If you've read through this thread, hopefully you've learned a bit about t1a tumors and how controversial it is regarding whether to treat them with chemo/Herceptin or not. The basic gist is this:
- NCCN guidelines do not recommend chemo/Herceptin; only endocrine therapy to be "considered"; it is felt the treatment risks of chemo/Herceptin outweigh the recurrence risks
- however, recent research has shown possibly higher recurrence rates for HER2+ t1a patients than previously thought. As a result, MD Anderson, as well as some other oncs across the country, have recommended chemo/Herceptin to these patients, especially if they are younger (< 50), are ER/PR neg, and/or have grade 3 disease.
I had a 3 mm HER2+ tumor, ER/PR positive, grade 2. After much deliberation and multiple consults (including flying to MDA for a consult), I decided to proceed with TCH. I decided I would at least try treatment and if it was too hard, I would stop. I wanted to feel as if I had tried to do everything possible and thus would have minimal regrets if a recurrence did happen.
I stopped at 4 TCH's instead of doing the full 6 b/c of side effects. I had a rough time with chemo - it was harder than I had expected. I felt the additional 2 TCH's were not worth the extra risk. I also stopped Herceptin at 6 months b/c of fear of developing heart issues. And, I stopped Tamoxifen early b/c of side effects (20+ hot flashes a day, sexual dysfunction issues). Since I am now in early induced chemopause (not an easy transition for me!), I am hoping the reduced estrogen being produced by my ovaries is protective enough, given the small size of my tumor and having had a BMX. I decided I had hit it hard with TCH and my risk at this point for recurrence is probably around 7 to 10% - the reduction of recurrence by 3% or so by adding Tamoxifen was not worth it to me, given the side effects.
As you can imagine, none of these decisions were easy to make. I truly believe no one knows what the "right" answers are - and only each of us can make the call for ourselves based upon lots of soul searching and gut "testing". I wish you all the best - hugs to you as you try to make this decision. It is so hard being in the "gray" area for treatment!
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Thank you, dancetrancer, for your response. Yes- I have read through all the replies here. It just seems that the latest research is trending to treat smaller and smaller her2+ tumors. I guess I worry that as soon as I choose NOT to do chemo and herceptin that the guidelines will change for me and I will have regrets that I didn't do all I could. It's interesting that the oncologist I talked with is exactly my same age. (age 54) I asked her what she would do if she were in my shoes, and her response was "I just don't know." In fact, she said that several times in the course of our conversation. ugh... I'm 2 and 1/2 weeks past my lumpectomy so I know I need to be making some decisions soon. But I need to feel a peace about this. Once I hear results from the tumor board next week maybe I'll feel more certain. Right now I am more confused and conflicted than ever.
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I so understand how you are feeling duckie...I know we all do. It's such a DIFFICULT decision to make - I felt just like you - was afraid they'd change the guidelines after I made my decision, or some new study would come out further verifying the higher risk...uggghhh. Wish we had a crystal ball. The number of life and death decisions we have to make as we walk this hard path is staggering. Hugs to you - keep us posted! We will support you no matter what decision you make.
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duckidee: It is a tough decesion and you are right that there is not a lot of good research on women with our diagnosis (1-6mm and HER2+). I would highly recommend getting a second or even a third opinion. I cosulted with 15 M.O before I felt convinced about the right choice (7 of them were a tumor board that reviewed my case). I ended up deciding to do chemo ( 4 rounds of TCH followed with Herceptin) and have been really happy with my choice. Majority of the M.O's that I saw said no chemo but the few that suggested chemo made really compelling cases and in the end I went with what seemed like the right fit for me ( went with my gut). I had extensive DCIS with 2 invasive components (1.65 mm and .8mm) ER/PR/HER2 positive, grade 3, P53 positive, and Ki-67 index 30%.
It is very difficult to make such a huge decision about your health and future. I found that getting opinions and researching as much as possible was helpful and it seems like you are already on the right track. Good luck with things and keep us posted.
p.s I know there are some women on this thread who opted not to do chemo and have been really happy with their choice, hopefully a few of them will chime in to give you the other side of the coin.
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I went through this same scenario, duckidee.....and all the ladies are giving you Good info! My BS already had me scheduled for the port when I came to my post op......but my 1st MO advised no chemo because of the size...multi focal with the largest one being 3mm. I was VERY conflicted and sought a 2nd opinion. My 2nd didn't blow my concerns off and even authorized an Oncotype (which my first MO refused, saying the HER2+ is not used for HER2+). After the Oncotype came back at 20 (intermediate) I was still conflicted but she convinced me that the chemo could cause more issues than positive effect. None would say that my age was a factor but with all I've read since I believe it is.
Now, I just came home from my DIEP surgery and I'm happy that things are going well. I feel a little guilty sometimes that I got a pass on radiation by opting for the mx......and then got a pass on the chemo. I SO ADMIRE all the ladies for making the hard choices. I'll get my pathology on my prophylactic MX next Wed. And I'm feeling like that will be the last time I will worry about recurrence. Yes....I know it's possible even then, with metastasis f it does.....but I'm now focused on getting through the reconstruction, the hormone therapy....and getting to a new normal. Trust your instinct ....but get ALL the second, third, etc opinions you need to come to a decision you can get comfortable with. Blessings!0 -
Thank you, ladies, for all the good advice. I spoke to the onc yesterday, and she told me that the tumor board met and seemed to agree with her that no chemo is necessary. But since I am so conflicted about it all, she suggested I get a second opinion. So she is referring me to a breast cancer specialist at a larger metro hospital nearby. Hope to get in and talk to them soon. I think I need another perspective and - if nothing else - someone who'll do a better job explaining things to me. The current onc is nice enough, but she's rather clinical and analytical and isn't much of a teacher. I came away feeling frustrated. Anyway, thanks for telling me your stories. It helps to know I'm not alone. I thought the surgery would be the hardest part of this. Turns out it is a cake walk compared to this treatment decision limbo! I really appreciate your advice. Thanks again!
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Duckiedee: Get that 2nd opinion and 3rd too if you don't feel comfortable with your MO. My first MO was also very clinical and I didn't care for his attitude. My new MO is also very clinical......but very thorough and listens. You NEED to have an MO you can relate to and feel comfortable with. Don't accept less! Its a long term relationship! Keep us posted too! Blessings!
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I echo chachamom's advice. Do whatever you need to to try to come to a decision you feel comfortable with. Yes, the treatment limbo decision making time is definitely the worst - hugs!
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New study out that applies to our group:
Abstract
Background: Randomized clinical trials showed the benefit of adjuvant trastuzumab-based chemotherapy (ATBC) for node-positive and/or >1 cm HER2+ breast carcinomas. No efficacy data have been published on ATBC in large series of pT1abN0 HER2+ tumors.
Patients and Methods: This retrospective study evaluated 276 cases of pT1abN0 HER2+ breast tumors in eight French cancer centers. Factors associated with prognosis and ATBC prescription were analyzed.
Results: A total of 129 cases (47%) were treated with ATBC (ATBC+), 19 with chemotherapy alone, 5 with trastuzumab alone, and 123 (45%) with neither trastuzumab nor chemotherapy (ATBC−). ATBC use was associated with the date of diagnosis (before or after June 2005) and with poor prognostic features. At a median follow-up of 44 months, there were 13 recurrences in the ATBC− group and 2 in the ATBC+ group. ATBC was associated with a significant survival benefit (99% 40-month disease-free survival for ATBC+ versus 93% for ATBC− cases; P = 0.018). Lack of hormone receptors (HRs) and the presence of lymphovascular invasion (LVI) were significantly associated with a poor prognosis and a greater benefit of ATBC.
Conclusions: ATBC was associated with a significantly reduced risk of recurrence in pT1abN0 HER2+ tumors, and was more beneficial in HR− and/or LVI+ tumors.
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Well, I am a member of this group too it appears.
Dancetrancer - how did you save your hair with cold caps? What's the protocol?
Thanks
Susan
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Hi Albertan - welcome to the group - sorry you need to join us, but glad you found us!
I rented Penguin Cold Caps. The protocol is rather involved, but the gist of it is, you "precool" the scalp for 50 min prior to starting chemo, then change the caps every 30 min during chemo and for 4 hours post chemo. Essentially you are cooling the scalp while the chemo is infusing; this causes reduced blood flow to the scalp, which means less chemo gets to the scalp.
If you've already had one treatment, you will have hair loss for sure. If you decided to use the caps at this point, the main benefit would be to reduce further hair loss and also allow the hair to start growing back sooner than normally would happen after chemo (b/c it will be growing during chemo). The caps are rather expensive to rent, so you will have to decide if that advantage is worth it to you or not.
If you are still interested in trying the caps, check out this thread:
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I had my first T/C treatment on Monday. It was AWFUL. Has anyone decided to not continue the treatments? Orginal pathology was 7cm of DCIS er+ pr+. Final pathology showed small invasive 4mm er+ pr+ her2+, but MO didn't recommend herceptin. Also, oncotype showed er-. Oncotype score 34. I also used cold caps and have a patch of hair in the front that is still tender. Opinions?
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slb11:
1) Why would he recommend chemo but NOT herceptin??? Your IDC was HER2+, right? Granted, sometimes the only treatment we have recommended is endocrine therapy (Tamox or AI). But if we DO have chemo recommended, it is always with Herceptin due to the HER2+ factor.
2) How many treatments are being recommended? I know how you feel, I wanted to stop after each chemo - it was rough for me, too. I made it through 4 and stopped there (but continued with Herceptin) . I know several on this board have only had 4 tx's recommended.
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My MO said that even though IDC was her+ that the guidelines with herceptin start at 6mm. I just want to make sure since I'm already having to go through this that I'm doing everything possible to reduce risk. Originally, he wasn't recommending chemo at all until he got my onco score of 34 . Also, taking into consideration that I'm 30.
My MO is recommending 4 rounds of T/C. It make it so difficult being close to the Christmas and I have 3 little ones who don't understand.0 -
National guidelines yes are for anything over 6 mm. That's why tx under 6 mm is controversial. Oncotype scoring includes HER2+, so testing is redundant. Most who are HER2+ don't get the oncotype b/c of course the score will be high...the HER2+ raises it up.
If you are wanting to do everything possible (which means adding Herceptin), then you may wish to seek a 2nd opinion.
I read on the cold cap thread how you have 3 little ones...I can only imagine - I hope you have help and support at this time! This is the time for friends and family to step up and help out. Hugs to you!
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Thank you.... The help is slowly starting to dwindle... I had tons of help at first after surgery, but everyone has been so busy with the holidays and their own lives.
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Sadly, that does happen - sometimes it is "out of sight, out of mind" kind of thing...and yeah the holiday time doesn't help. You may need to advocate for yourself - ask for help directly - if you feel comfortable doing so. Or perhaps contact the American Cancer Society - they offer lots of great resources/help during times like this (from volunteers).
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Thank you for the great info. I appreciate it!
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Hi
IDC 4mm, dx Sep 2012, 62 yo, Grade 3 , ER/PR -ve
Recommendations from Docs:
Surgeon 'have a discussion' w an oncologist
Oncol 3 options , 1. no chemo, 2. limited rx w chemo herceptin (x4 3 weekly carbo + herceptin) or 3. chemo plus 12/12 herceptin
Chose 2 and now post second treatment.
Interested in other similar regimes, don't seem to see any similar.0 -
I had 4mm IDC my MO recommended chemo w/o herceptin. I've had 1 round and I've decided that was enough for me!
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SLB11
So sorry to hear your first round of chemo was terrible...I too had a horrible first round and was very close to throwing in the towel. I found that the body adapts and it got a little easier the second time ( still not great but do-able).
It seems the herceptin is a key player with our treatment and you might want to consider getting a second opinion or ask your m.o about moving forward with just herceptin infusions if you are sure about not wanting to continue chemo. The herceptin has minimal to no side effects and is the targeted drug for the her2 amplification.
Having little kids makes things extra hard, I too have little ones at home and I think that was the most difficult part of my treatment!! Hang in there and I hope you start feeling better soon!0 -
I couldn't agree more with Lmont's advice!
mopsy12, welcome to the group. Many of us did TCH (taxotere, carboplatin, herceptin), but on an every 3 week basis, not weekly. I too have not heard of it being done weekly, except for the herceptin part (some of us choose to do Herceptin weekly, not tri-weekly).
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I'am sorry my english is my second language!
I'M AN EXAMP THAT T1A MUST RECEVE HERCEPTIN FOR 1 YEAR AND PROBABLY CHEM. also.
I was T1a in mars 2009 (triple +) HER2+ 2mm no herceptin, no chem. only surgery, and intensive radiotherapy (study) 2 tx/day x 5 days double dose each treatment and only a the part of breast. IT WAS THE RECOMMANDATION IN 2009. BREAST CANCER SYMPOSIUN SAN ANTONIO 2009, herceptin only >T1b for early stage x 1 year, no prove for T1a. It's difficult to find T1a and spécialy her2+ <25% of the breast cancer.
IN may 2012, I was running 5 km 3-4 times a week, so i way in very good shape. The first day (april 19) that I change my position of running (because I saw a theacher), I felt a pain between my scapulum(? i don't know in anglish) D5-D6. I thought it way a sprain of the thoracic spine. The pain way still present the june first. I had a scint. of bone and the result was +, ...... after all the test = bones and lung mets
I'm 46, NOW I RECEVE HERCEPTIN, ALL MY LIFE... since 2012 of july.... (HOW LONG?? NO ONE KNOWS HOW LONG BUT THE STATISTIC IS NOT GOOD) AND I RECEVE ALSO TAXOL UNTIL MY BODY FEEL TO MUCH DYSTHESIS (NEUROLOGIC PROB.) OR PROGRESION OF THE META.
I THINK YOU SHOULD FIGHT TO HAVE HERCEPTIN FOR 1 YEAR. I did fight in 2009, not enough...
take care
lulu
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Hi luludoc - welcome and thank you so much for sharing your experience and advice. I have added your info to my informal poll at the beginning of this thread. I am so sorry to hear of your recurrence.
Cancer SUCKS!0 -
bumping for any potential newbies
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Thank you all for sharing here. Because of the comments here, I decided to do the full recommended treatment if I get through it all: 12 weeks of weekly Taxol/Herceptin, followed by Herceptin every 3 weeks for a year, plus six weeks of 5 days a week of radiation after the chemo. Until reading and re-reading the posts here as well as a lot of internet research, I had decided only to do radiation. I'm also taking Host Defense Turkey Tail mushroom supplements, just 2 a day. I am really sorry to hear what happened to you luludoc. Your post was the one that tipped me over the edge to be grateful I have the opportunity for treatment and just try. Thank you for sharing and I hope the best for you and for everyone with this disease. I had a 5 mm her2+++, hormone negative cancer inside DCIS that was removed 11/21/12 and the marigins, though clear, were enlarged on 12/04/12 at the same time as one lymph node (clear gratefully) was removed. I had the first Taxol / Herceptin last Monday and am very happy so far so good. I was very, very scared of an allergic reaction and glad to get through the first one ok. They gave me a half of a dose of Atavan before the treatment and it really helped calm me down. I was unable to sleep for 2 nights before the treatment due to leg and back pain exacerbated by stress. I was happy to be able to sit in the chair without pain, though I couldn't lie back even with the Atavan. This Monday is #2. I hope it goes as well. Thank you all for your generosity of spirit and I wish everyone freedom from cancer.
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Welcome montana - sorry you have to be here, but so glad you found our little group! I am so happy this thread helped you make a decision. It is why I started it. I will add your data to the initial post. Wishing you well with your Taxol and overall treatment!!!
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Thank you dancetrancer for taking the time for your comments and good wishes and to do all this, and for everyone else's comments as well. We'll just keep hoping for the best for us all...
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