calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Dancetrancer,
Would it be worthwhile and reasonable to create an Addendum to your OP, to discuss a question I have raised in the Stage 1 forum thread titled, "Stage 1, grade 1 and premenopausal"? I posted there due to the extensive discussion there about trials such as SOFT, TEXT and TAILOR-X. Because there are those on that thread who have indicated my question is better addressed elsewhere, your thread seems like an appropriate one for my question to be discussed, since it is about early stage 1 HER2 positive patients and the dilemma involved in choosing an appropriate therapy.
Specifically, I wonder if any premenopausal HER2 positive early stage 1 patients here have provided any clear explanation as to why premenopausal HER2 positive patients were not (are not) included in the SOFT, TEXT, or TAILOR-X trials, so that they might benefit from considering the choice of OA + trastuzumab as a reasonable substitute for chemotherapy + trastuzumab? (My question is posted on page 46 of the thread titled, "Stage 1, grade 1 and premenopausal" in the Stage 1 forum.)
In behalf of HER2 positive stage 1 patients who are in this grey area, the question is relevant.
Thanks,
AlaskaAngel
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Before anyone replies to AA, be aware that her question is a loaded one that she has been asking for years. Numerous sisters have painstakingly given her the reason WHY HER 2 positive sisters have not been permitted to join such trials. While I am not asking anyone on this thread NOT to reply, please be aware of her fixation before venturing on a reply. Thank you!
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Just checking in and adding my name to the list of t1A sisters. I'm ER+ PR+ HER2+. Core needle biopsy showed grade 3 DCIS and ultrasound showed area of calcifications at 3.6 cm. I opted for a bmx due to the size of the defect that would be left with lumpectomy plus advice from several cousins who wished they had just gone for the bmx initially. In my case, it was the right thing to do as surgical path showed my area of DCIS to be 6+cm with 2 foci of grade 2 IDC (2mm and 3mm) and the contralateral breast showed ADH and calcifications. My cancerous breast showed only 3 calcifications on last years mammogram which had progressed rapidly into a large area of DCIS this year, so for me the bmx was the right option. Hoping to join the ATEMPT trial, but if not my M O is only offering tamoxifen at this point.
Thanks for all of the helpful info & encouraging posts!
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just talking about this with my MO this afternoon at UCSF. Here's my dilemma. I had bc in 1990 when I was in my late thirties. 1 cm tumor, ER-, poorly differentiated, grade 3,no nodal involvement, I had a mastectomy and they gave me CMF. They said Ihad a poor prognosis, yet here I am back for more.
My health has been excellent since then. However in Oct I was diagnosed with. bc in my remaining breast. 7mm, grade 2, ER+, and HER2+. I had a mastectomy in Nov and again luckily no nodal involvement.
The Dr who did my surgery said I had many options as I had so little disease. She said you don't want to do too little and you don't want to do too much. She is also the head of UCSF breast cancer center and co director of the comprehensive cancer center.
I sent my path report to my MO at Cedars Sinai in LA where I was treated in 1990 and who's been my MO until I moved north a few years ago. He said that he would only treat me with arimidex, as I am post menopausal ( thanks to the 1st cycle of chemo back in '90) and because the tumor was small. He cited studies that the survival rates for my case would be in the 90 percentiles. He has also never been one to sugar coat anything.
So today I met a new MO at UCSF and needless to say we didn't click. I've always been a strong patient advocate for myself and I 've loved everyone at UCSF.... except this guy, I was assigned to him as he is doing a study. As it turns out I'm not eligible for his study as I've had cancer before. Anyway, without discussing options and really my opinion about anything he was pushing for TH for 12 wks then Herceptin only for a yr. Also a port. My other Dr at UCSF, when I asked her about Herceptin last month said "oh, I wouldn't give it to you for a year"
I am now a nervous wreck as the Dr who treated me and who I trust at Cedars is telling me one thing and this other Dr is just pushing the other way without discussing any options . He said my previous cancer was more risky/ dangerous than this one but obviously he has a plan that sounds pretty heavy duty to me. I'm calling the guys at Cedars tomorrow, then the big Dr at UCSF and asking her about this. Reading these boards I'll do what I have to do obviously but I don't want to do something I don't have to do. My LA dr felt the risks of treatment wouldn't be worth the fee points of benefit I'd get,
I'm obviously not sleeping tonight as Inalso realize I need to find a MO that I like as someone here on these boards said it's a long term commitment. My husband didn't like the guy either as he didn't seem interested in answering our questions and seemed to be pushing an agenda.
This visit has left me totally confused , freaked out and miserable.
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Suladog--I think it is important to have trust in the MO otherwise you will never be comfortable with the recommendations. The studies I have read recommend Herceptin for one year even for the smallest of tumors because HER2+ is so aggressive. I did TH and just finished my 12th round-many do TCH. Best of luck
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Hi Suladog, and welcome to Breastcancer.org. We're sorry you have to be here... but glad you found this wonderful community!
As April says, it's very important to trust your medical team as there are many important decisions to make now, so if you don't feel confortable with this doctor, you are always free to ask for a second or third opinion. In the main Breastcancer.org site you'll find some helpful tips on Getting a Second Opinion (just click on the link).
We hope this helps. Let us know what you end up doing!
The Mods
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how was TH , the MO was telling me yesterday that the CMF I had 25 yrs ago was rougher. Also no one was. Getting me started on anything at UCSF right after my mastectomy on Nov, today the MO said that was no problem. Last time I was on chemo a month after my mastectomy.
Most likely I'll be doing this , just worried about hiw it will affect my ability to work and live a normal life. Last time I got my chemo in the Drs office at Cedars since he felt it would be better psychologically for me, this time it's at a huge cancer center Ucsf and seems like a huge production though the TH infusion is only an hour. I'll likely do a cold cap and that adds time
Thanks so much for your answer there was no internet the last time around and I was really on my own
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Additionally, I would ask for a recommendation from the hospital's tumor board. There is no right answer for small tumors. I hope you also read the link that I posted earlier. It specifically addresses cases like yours! Good luck!
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Suladog, I did TH for 12 weekly treatments, followed by herceptin for the remainder of the year, for a 5mm tumor. I was on the fence because the cutoff for recommending chemo/herceptin was 6mm. After reading more about Her2+ tumors I'm very glad I did the TH. Taxol affects people in different ways; for me it was pretty easy. I did get anemic but not to the point of needing treatment for it. I took l-glutamine when I started getting twinges of neuropathy, and it seemed to help. I worked throughout, except on treatment day. I used cold caps, and lost almost none of the hair on my head. never any nausea. Study results for TH for tumors like ours came out in 2014 and were fantastic. I hope you can find an oncologist you like - maybe talk to the nurse navigator at UCSF to get some help choosing.
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Suladog, welcome to my thread.
You will find the majority of docs (based upon my reading) will recommend chemo and Herceptin for any HER2+ tumor > 5mm. This thread is for < 5 mm, so don't be confused by the controversy discussed here about treatment. Since you are 8 mm HER2+ I am not surprised at the recommendation by one of your docs for it. If I were you I would get several more opinions so you can feel more at ease with whatever decision you make. I got 4 opinions - helped me decide what to do.
The exceptions I've seen for not to treat in your scenario are those who are older than 70 and/or have heart failure problems already - because Herceptin has a risk of causing heart damage. The risk is very low and typically the heart will recover if treatment is stopped. You are monitored with echo's/mugas every 3 months. But if you are older and or already have heart failure issues they may consider the risk greater than the benefit.
In terms of chemo regimens, the Dana-Farber did a study on Taxol + Herceptin X 12 treatments (TH) for very small tumors like yours. It was shown to be effective in reducing recurrence risk, and I believe is now the standard of care for small tumors that are HER2+.
I did TCH b/c the TH study was not completed yet during my time of tx. I wish I had done TH as it is "chemo-lite" in comparison to TCH. It is a kinder, gentler, regimen, from what I have read.
Hopefully this information will help you have a more informed discussion with your oncologists. Wishing you all the best in your decision process!
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I was 7 mm which was why I got so confused and was getting two opinion
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no, I'm in the early 60's in age and no heart problems
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I thank all of you for the wonderful Adobe I'm likely going to do this but with a Dr I feel comfortable with. CMF was supposedly rougher so this guy said but I had no problems at all with it and tolerated it well. I will be using a cold cap 4 sur
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thanks do much!!! I didn't have a hard time at all w/ CMF though many friends did, this makes me feel better about TH. They want to do a 1 hour infusion but of course extra time for the "hat" and blood tests. What brand cold cap did you use? People here are talking penguin. Not covered by insurance evidently?
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You are most welcome! I did Penguin and so far most women on the cold caps thread (have you been there yet? Please join!) choose Penguin so we have the most "informal data" on success with them. But yes they are very expensive and only a few have wrangled with their insurance companies to get $ for it. There are two options to be aware of:
1) there is a foundation that provides financial assistance for CC's for those who qualify
2) several women on the thread have had success with Elastogels (MUCH cheaper), but follow the Penguin protocol
Please come on the CC thread (https://community.breastcancer.org/forum/6/topic/735873?page=421#idx_12604) for more info and support through the process. Wonderful ladies over there! Those who have done it with Taxol only have done really well, as Taxol in general is not as hard on the hair compared to other chemo regimens.
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thanks! This iPhone keeps correcting my spelling and adding words. Adobe wtf? I earn my living as a screenwriter so yes, I am literat
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I would be doing taxol only with a herceptin chaser
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Suladog - I also used Penguin cold caps. Infusion days were long - premeds for about 45-50 minutes (start cold capping during premeds), then an hour for taxol and an hour for herceptin. You have to continue cold capping for 4 hours after taxol is finished, so the herceptin time counts towards the 4 hours. I stayed at my facility the entire time, since we had a medical freezer there. Others who use dry ice for their cold caps often leave the facility and finish up their cold capping at home. Having the medical freezer reduces the cost of cold capping substantially, because the dry ice can be expensive - expecially for 12 weekly treatments. Is there a medical freezer at UCSF?
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yes, they have a freezer and I'm assured I'll get a good seat "by the freezer", they said that for me they will cold cap for an additional 1/2 hour after chemo, but maybe I'm mistaken
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did the cold cap work for you? Back in the day 25 yrs ago they weren't so hot or maybe they didn't even exist. I'm hearing good stuff about them now.
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Suladog, yes, the Penguin cold caps worked very, very well for me on the Taxol/Herceptin regimen. According to Penguin's guidelines they want you to continue capping for 4 hours after chemo. That may be excessive, but I sure wouldn't go down to half an hour!
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thanks! Noted!
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Suladog, I am currently getting T/H at UCSF. Feel free to PM me if you'd like to hear my experiences there. Happy to talk by phone if that would be helpful.
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thanks!!! I'm doing that ni
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I'd love to hear about how they handle things there
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TTfan that would be great, evidently my account limits the number of private messages I can send each day. I don't know how this works are there different sorts of accounts
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Dancetrancer I keep getting a message that says my account can only send a limited number of private messages a day. What does this mean as I am unable to send any private messages today, are there other sorts of accounts and how does one get one?
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I have no idea Sula as that has never happened to me. I suggested you contact one of the moderaters for help.
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thanks, I did and it's fixed. They just wanted to make sure I'm not a spammer.
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