calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
-
Well I'm T1b actually. IDC .8mm with some DCIS mixed in. Did TCHx5 actually. My onc said after 4 she wasn't worried about me anymore and 5 and 6 were optional for me. Came as a complete surprise to me today as i was committed to 6 treatments. Doc said I don't need 6 then I won't argue. This is due to only needing 4 TCs with Herceptin to get the Herceptin kick started which is what I really needed more than anything. I was there for my 5th treatment when we discussed this today and I decided to do the 5th for a bonus kick in the cancer pants. I feel good about 5. 4 felt like too little, 6 felt like too much toxicity. Starting Herceptin only on Feb 21. This was news to me as well today, that I'll be on Tamoxifen not for 5 years but 10. This is a result of a study the came out in December and is most effective for premenopausal women.
0 -
BTW, beaming with happiness my last TCH was today.
0 -
Nice to meet you bwcagirl! Yep, I remember my PFC (post f*cking chemo) day well - I shouted PFC from the mountain tops! Huge congrats!!! I stopped at 4 TCH's b/c of severe side effects, glad you were able to tolerate 5, and nice to hear your onc say she felt 4 was good enough.
0 -
Hello Ladies,
I finally have found the correct post. I was fkirst diagnosed with DCIS in 2010. I underwent lumpectomy and radiation. I was watched carefully every 6mths. December they noticed an area of question....more DCIS. My opti on was BMX. I chose tram flap reconstruction. I was in hospital for 2 weeks due to staff infection...currently have wound vac and iv antibiotics. Pathology report showed an area of idc.. .5cm that is her2+. I now have to do a lymph node disection when the infection clears and will start herceptin treatments afterwards (considering the nodes are clear). I haveto say that I am a newby to this....never expected this as I am sure we are all in the same boat. Has anyone had herceptin? I was told I would have herceptin with no chemo.
Wishing everyone well...
Laurie0 -
My MO recommended chemo and herceptin (TCH). I'm done with the chemo and am just on herceptin now. The herceptin is easy on me with little effects at all but the chemo was really tough for me to get through.
0 -
I also did TCH. It's not that common to have Herceptin only recommended, as Herceptin is synergistic with chemo, but perhaps the standards are changing. Nonetheless, if you are doing Herceptin only, your side effects hopefully will be minimal. The biggest risk is heart failure, you just need to be monitored with echos or MUGA's prior to starting and every 3 months while getting herceptin.
0 -
I did 1 round of TC then I changed oncologists and my new oncologist just recommended herceptin only.
0 -
New article out that may be of interest. I only have access to the abstract and tables seen at this link:
http://www.sciencedirect.com/science/article/pii/S0960977613000477
Adjuvant chemotherapy in T1a/bN0 HER2-positive or triple-negative breast cancers: Application and outcomes
Abstract
We assessed practice patterns and the impact of systemic adjuvant therapy on human epidermal growth factor receptor 2 (HER2)-positive or triple-negative, node-negative breast cancers up to 10 mm in size. Records of 161 patients identified among 1415 cases diagnosed in our institutions between 2000 and 2010 were assessed for factors associated with recommendation for chemotherapy and survival outcomes. Adjuvant chemotherapy was recommended in 53% of patients, more commonly in patients with younger age, stage T1b, high grade, HER2+/ER− status and diagnosis after 2006. With a median follow-up of 54 months, the 5-year cumulative incidence of recurrence was 5.3% and overall survival was 93.2%. Age less than 40 and presence of lymphovascular invasion (LVI) were associated with higher risk of recurrence. In a univariate analysis administration of adjuvant chemotherapy was not associated with a significantly better recurrence rate (P = 0.33).
0 -
Thanks DanceT. I come back to check on your posts as I know you are up to date on the papers. Eventhough this paper didnt add much to what we know I liked the fact that they said "Our results support assertions about efficacy of trastuzumab, since we observed no recurrences in patients who received it." Again one has to be cautious because the number of people studied were low but it is still nice to see such results/statements.
0 -
Interesting hopeful123 - I do not have access to the full article, so did not see that part - thank you!
0 -
Dance -
You are going to have to update the stats. I am one of the ones that was DX in 2010 and chose not to do chemo/herceptin. I was just DX with a local recurrence yesterday. I have been told it is almost an identical DX as the first, DCIS with micro-invasion of IDC. Don't know much more right now but I will be contacting a plastic surgeon to discuss BMX (heard it may be difficult due to the radiation). Much research to do now!
Jenn
0 -
Jenn - I am so sorry to hear about the recurrence.
I hope your PS consult goes well - yes, recon after rads can be more challenging, but it can be done! Please keep us posted as to what other treatment, if any, you need, and what more you find out about the pathology. I am curious to find out if the microinvasion is HER2+ again or not. Here to support you! Thank you for letting us know - I will update the stats. 0 -
Jenn,
I am so sorry to hear about your recurrence. It is good to see that it was caught early. You can fight this! Keeping you in my thoughts and prayers.
0 -
I'm sorry to hear about the recurrence too, Jenn.
I know one can't go back in time, but with a grade 2, the question I have is, would trastuzumab used with ovarian suppression have been more protective than tamoxifen? There isn't any way to know, but I wonder.
A.A.
0 -
The path report from the biopsy indicates ER 100%, PR 60%, KI-67 30%, HER2 3+. My belief is that they didn't get it all the first time (margins were extremely small) so the fact that this is in almost exactly the same place & same stats really doesn't surprise me and mostly likely is remnents of the original resurfacing.
I can't look back in regret - I was very well informed and based on all the facts I chose not to do chemo/herceptin, I chose to stop the Tamoxefin, I chose to not insist on getting better margins and I knew this was always a possiblity. So now I go into this even more educated than I was the first time and will do what I have to to make sure this is the last time!
Jenn
0 -
Jenn - it does sound like it was because of the close margins. I had close margins as well, only after a MX. Did rads b/c of that, which sucked b/c I had hoped to avoid rads by doing a MX! Anyways, I don't believe in looking back with regrets, either...even though my brain does try to do that to me, I fight it! We all make the best decisions we can at the time we are in situations. No one really knows what is the best plan of action in our cases. Please keep us updated on your treatment plan. Wishing you all the best!
0 -
Hello Ladies...
Had surgery to check lymph nodes...dissection. NEGATIVE! I am so relieved. I am seeing the oncologist in two weeks to schedule/start herceptin.
Laurie0 -
Such wonderful news Laurie!!! I wish you well the Herceptin - most people tolerate it very well!
0 -
If anyone in this selective little group is going to MD Anderson in Houston in the future, send me a PM. I live in the area and would love to meet you and trade stories.
I am T1a (2mm invasive grade 2) and also have high-grade DCIS with necrosis. ER+ PR- and HER2+ (+3) What scares me is that Ki-67 is high and p53 positive, which means fast growing mutated cells. Just had my lumpectomy 2 weeks ago and am waiting to see my oncologist to discuss treatment. I am 59 years old. This bulletin board has been extremely useful for me to see what options are available and to get a list of questions ready for my onc. I'll update you when I have a treatment regimin decided on.
0 -
First of all thanks to all the sisters out here for supporting people like me. Theoretically I do not belong here but still want to post here. Thanks Dancetrancer, Beesie and others for responses via PM.
Age - 28 - No family history of any kind of cancer on either parients side.
1)03/2013 - Initial DX of DCIS Comedo Necrosis Grade 3 via core needle left breast ER / PR -VE
2)03/2013 - Did MRI - Along with the area of concern they found something suspicious on right breast (BI-RADS - 4) did biopsy and came benign
3) 04/2013 - Lumpectomy revealed 4.5 Cm high grade extensive DCIS along with 5 foci of micro-invasion each one less than 1mm (Did not report individual sizes, does it matter?).
Micro-Invasion margins were all -VE (all greater than 0.5Cm Except Anterior/Posterior superficial margin of 2mm towards skin). DCIS also all margins -VE but Anterior/Posterior Superficial towards skin margin of 1mm and deep margin of 1mm. Doc said nothing can be done about deep margin as he shaved everything he could till wall so this can be only taken care by radiation.
- Lumpectomy specimen DCIS is weakly positive for ER (20%) and weakly positive for PR (50%).
- Micro-Invasion is ER / PR -VE , HER2 + by FISH (HER2/C-17 ratio of 3.0), Ki-67 positive (20%)
4) Scheduled for reexcision & SNB in 2 days. I am hoping will get -ve margin for DCIS and micro-invasion greater than 0.5Cm and -VE nodes.
I am just worried about micro-invasion even if less than 1mm (but 5 of them). I want to go for kids and really do not want to take any toxic in my body. Any though will be appreciated (Again got lot of reply via PM, thanks for that).
0 -
I am sure all of you will be aware of this but wanted to anyways post this link:
FDA Approves Herceptin® for Use as Single Agent in Early Breast Cancer
0 -
Swearp, thank you for that link to the Herceptin article - interesting!
Welcome to the thread and also welcome to flatpikr! Newbies, please do keep us posted on how you are doing with your treatment decisions/plan.
BTW, I'm doing great on Tamoxifen finally. My hot flashes have subsided finally...hoping they don't pick back up with the heat in the summer, but for now, it is great to not have side effects and feel protected at the same time!
0 -
That is OLD information! Prior to being approved for Early Stage HER 2 Positive disease, Herceptin was used for ONLY metastatic BC. Herceptin is now being given to EARLY STAGERS ALONG WITH CHEMO for several years now. There is however, a current clinical trial for OLDER (over 70) EARLY STAGERS who are HER2 positive WITHOUT chemo. Not sure if they will be able to accrue enough patients to make the trial statistically significant. The trial just began a year ago....so it might take another decade before we know any information...And the question then will be whether or not some of the data can be used for younger patients.....
0 -
I will be two years out this month with no recurrence. I had a BMX
I did have a small amount of microinvasion so initial oncologist wanted to do herceptin, I got 2 other opinions and majority recommened no other treatment. I went with majority
0 -
Awesome awesome alliesmom!!! I just recently passed the 1.5 year mark.
0 -
That is great!
0 -
alliesmom15: Writing you a PM.
@Dancetracer - I have not yet met medical oncologist and tried to get appointment for Dr Slamon at UCLA. Have appointment at Stanford next week and Dr. Slamon's assistant will call us in next couple of weeks to discuss appointment if available. She said Dr Slamon does not see patient very often, only once a month or so.
voraciousre - I also though that information is not relevant otherwise it would have been like a breaking news for patient like us. Posted a link if anyone has just taken Herceptin without any chemo for early stage Her2+ BC, but looks like there is not much data.
0 -
swearp,
I personally know one woman with early stage HER2 positive bc who refused chemo and did Herceptin plus about 3 years of an AI. She is 6 years out with no recurrence.
The reason there is not much data is because the original trials were done using trastuzumab WITH chemo, and with limited exception, the trials were limited to those whose tumors were at the upper end of early stage bc.... so the info just isn't there. And quite wastefully and stupidly, we have not been allowed to find out which patients don't benefit from chemo but do benefit from trastuzumab.
A.A.
0 -
I celebrated 5 years in March.
No treatment (BLM)
0 -
Dejaboo - oh what a wonderful feeling it must be to be 5 years out!!! I am SO happy for you!
Swearp, someone on this thread earlier met with Dr. Slamon - you may want to browse earlier in the thread for what he had to say.
I debated over and over again about doing chemo with H or H alone. I eventually settled on chemo with H after meeting with MD Anderson. They told me they just don't have the data to know if H alone is effective enough for early breast cancer patients. Now that I have prediabetes as a consequence of the high steroid doses required for chemo, I sometimes wish I had done H only. At the same time, I feel more protected because I did the chemo. Unfortunately, there are no crystal balls to clearly predict what will happen with or without treatment. I wish you the best in your decision. Don't forget that your microinvasions, although multiple, were all < 1 mm. I have not seen anyone recommend chemo/Herceptin for micro's that small, but of course that doesn't mean some doc out there might suggest it.
0
