calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Had my 6 month follow up with my Onc. back in March. I was only given a blood test, no imaging was recomended for my right boob. My CEA and CA27-29 levels came back negative and slightly lower than they were a couple of weeks after my UMX. I received no chemo or rads. Still cancer-free.
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Cancer free for 5 years. DX May 2011. I opted for no treatment.
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HUGE congratulations alliesmom!!!
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Hi PatinMN, I met with the oncologist today about my t1b Her2 node negative tumor (6mm) and he said I have an excellent prognosis. I was so happy to hear this. But he wanted to give me extra insurance with chemo. Looks like I am getting 18 weeks of Taxol and Perjeta then year of Herceptin. I finally feel good because I have a plan!
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Thank you so much, each year it becomes more of a distant memory and I am less afraid
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Great to hear alliesmom15!
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I just wanted to drop in and say hi. This thread was very helpful to me in choosing my treatment plan - I went with Taxol Herceptin. I recently had my 4 year cancerversary, and am doing well. Hugs to everyone!
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Toastiecat, thank you for posting and congrats on your four year anniversary! I have the same treatment as you plus Pergeta and it gives me hope that you are doing well!
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Great to hear that Toastiecat - and HUGE congratulations on 4 years!!!!!!!!!
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Congrats Toastiecat - always great to hear about positive outcomes!
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--just checking in. Congrats to those with anniversaries! It's so encouraging to hear.
I finished my year of Herceptin last month & feel great. Only side effects on the first infusion.Never needed to get a port put in, although I was a pretty difficult "stick" in the last few rounds. (My onc let me opt out of chemo)
Being in a non treatment stage is both wonderful and weird. Now I look forward to counting the years. Prayers for all who are traveling this road.
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Congratulations horsegirl!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Hi Everyone! Cwhitney, sorry I missed your message in June. I must have accidentally "unfollowed" this thread. Yes, we have a very similar diagnosis. Hope you are doing well on weekly Taxol! What week are you on? I had 12 weeks of Taxol/Herceptin and am now every 3 weeks Herceptin only. Just had my Hip flap reconstruction 2 weeks ago, so I skipped my last Herceptin. Will also start up my Tamoxifen again as well (stopped it for the surgery due to blood clots). Cwhitney, I see that you are taking Perjeta also. I don't know much about Perjeta...is it "chemo" or "immune therapy"?
Horsegirl, so glad to know you are doing great!!
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Hi Nolagirl1126. Thank you for responding! I'm glad to hear you are done with chemo and just doing Herceptin. It sounds like your reconstruction is going well. I am at the halfway point of Taxotere, Herceptin and Pergeta. My treatment is 6 cycles every three weeks. So far, chemo has been uneventful other than a few monster periods and feeling tired the week of treatment. I was surprised that I was getting Pergeta. It is like Herceptin (immuntherapy) but from what I read, is used to shrink tumors before surgery and used for later stages. I never had a tumor to shrink. My 6mm cancer was removed when I had a biopsy. I'm thinking my oncologist wanted to throw everything at my body. I'm not complaining! After chemo, I have to get another tissue expander replaced since my right side got infected. It will feel good to move forward. It has been a long 4 months! Anyhow, I hope you are healing well and wish you and everyone a cancer free future!
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My 3 year cancerversery was this past summer, and I just had my third year mammogram on one side as well as my breast surgeon checkup, and all clear! I must admit that the scanxiety was higher this time around. Every minor ache, pain, or ailment, including a stuffy head from allergies (which was alleviated by Allegra, as suggested by surgeon and her nurse practitioner :-), was suspect. Now that it's over, I feel relieved and like life continues on its same path of joys, discoveries, hard work, love, and loss. Hope everyone is doing well!
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Rosamond, congratulations on 3 years!!!!! Doing great here!
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Congrats to you, Rosamond! 🌷
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Hi, we really must not be too common since it has been a month since the last post. I found out the great news that I have only 2mm of IDC and 0/5 nodes last Saturday. I have not met with the MO yet but have my surgical f/u tomorrow. Although I am happy about the initial report, I am a little freaked out over being in the grey area. I really like my surgeon, but she doesn't seem concerned. I was like "but doctor, um, the HER+ Status...what about that?". She's taking my case to the tumor board tomorrow to discuss this and some close margins. Until then, any words of wisdom? I have read through the thread and the posted studies. Thanks
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Joyandpiece, my cancer was bigger than yours, 6mm, so technically I am t1b. From what I read, anything above 5mm, chemo should be given. Below that, it depends on the oncologist and patient. I had a tumor board too. I know this sounds crazy but I was relieved that I was just over 5mm because I wanted more than surgery and tamoxifen. I am 42 with three kids and I wanted to throw everything at it. I am on my five of six doses of Taxotere, Herceptin and Pergeta and it is not nearly as bad as I thought it would be. If you don't like what they recommend, you can always get a second opinion too. Good luck!
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I'd like to clarify that the NCCN guidelines for breast cancer (Professional Version 2.2016) do not indicate that chemotherapy plus trastuzumab should be given in all HER2+ cases where the tumor is larger than 5 mm.
For example, if a person has IDC, that is node negative (N0), with a Tumor 0.6–1.0 cm, that is hormone receptor-positive, HER2-positive, then the guidelines provide (See pdf page 17, chart BINV-5):
"Adjuvant endocrine therapy or
Adjuvant chemotherapy with trastuzumab followed by endocrine therapy"
The NCCN guidelines for breast cancer are available with free registration here:
BarredOwl
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joyandpiece, my best advice is to listen to what your doctors have to say, ask questions, and then listen to your gut and decide if you need a second opinion or not. Many women here have decided to not have chemo/Herceptin and are still doing well. Many have opted to get the more aggressive treatment and are doing well. I'm sorry you are in a grey area. It surely sucks! No easy answers, IMO. We understand.
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Thank you all. Your responses really fall into line with what I know and feel. I am trying to keep an open mind going forward.
BarredOwl - I believe it was a post from you awhile ago that made me realize there were published guidelines - Thank You!
Dancetrancer - Thank you for starting this thread. Great advice all around. I'm no expert at risk vs benefit and hopefully the MO is easy to work with and talk to. I do have two NCCI centers within reasonable distances if I need to go that route.
C Whitney - I know exactly the feeling you describe. My gut tells me I want to throw everything at it. My DH hasn't done the same research, but he's concerned about my heart.
I'll let you know what happens.
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joyandpiece, good luck with your appointments. I remember how stressful it was in the beginning until there was a plan. Remember to focus on the good news of finding this nastiness so early!
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I met with the MO on Tuesday. After my research and my conversation with her, I decided to go with no chemo or Herceptin. I know there is a greater chance of recurrence than those who are HER2-, but feel the benefit for me does not outweigh the risks. Does it concern me? Yes, absolutely! At the same time, I am ready to embrace the decision with no regrets regardless of what happens.
On another note, I did not have a pre-surgical MRI due to presumed small size of tumor. I have insisted on getting one now to make sure there is nothing else going on in either breast. Insurance is approved and that should be happening soon to coincide with optimal menstrual cycle timing.
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Congratulations on making a decision and feeling at peace with it - such a huge thing!!! Yay!
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joyandpiece, glad to hear you are at peace with your decision. Lucky you...no chemo! Go out and enjoy your life!
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I had an left side simple mastectomy for DCIS, however, it turns out finding one small IDC with 2mm in the DCIS, and it is showing ER 100%+, PR -. When the lab tried to test HER-2, it failed in FISH test for "technically unsuccessful" reason shown in the PATH report. Then they tried IHC, it comes back as equivocal, which is inconclusive.
My DCIS is 2.2 cm grade 3 with comedo necrosis. The core needle biopsy tested before shows it is ER 90% + and PR 20%+.
During my surgery, my SO did SNB. She took three nodes because they are pretty close to each other, she can't tell forsure which is the first. So the PATH shows all negative in the operation, that is why she did not remove more nodes. However, the after surgery PATH report shows one of the nodes has isolated tumor cell, maximum length 0.16mm. So my final stage is pT1aN0(i+).
I also have margin pretty close to chest wall because I am very skinny and my breast is very small.
DCIS margin <1mm to cheat wall
IDC margin 1mm to chest wall
I am really worry about the HER-2 unknown status. because I am not sure if the tissue is enough to redo FISH or not. I am not aware if there is another way to test HER-2 besides IHC/FISH. Without HER-2 status, I can't think what my treatment plan suppose to be.
I am going to try 2nd opinion from University of Chicago / Northwestern University. I want to have them to re do my PATH report. I hope they can find out my HER -2 status.
Thanks
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Wendy that is a pretty complicated situation. I am so glad you are getting a second opinion on your path. I had 4 2nd opinions on my path, because of so much discrepancy between the path opinions, PLUS, I had multiple close margins, too (both at chest wall and skin, < 1 mm), so every time I went for a rad 2nd opininon, they wanted to re-do the path's themselves. It wasn't until my 3rd path that they discovered I actually had a 3 mm IDC! Prior to that, I thought I was DCIS only (the IDC wasn't discovered until 4 months post BMX).
Perhaps they will be able to get enough tissue to do a FISH...I hope so. I would be concerned, too, but primarily because the isolated tumor cell in the node is telling you this little bugger likes to travel, I believe? Although to be honest, I don't know exactly what the isolated tumor cell in the node means in comparison to a positive node - so maybe someone else here can shed some light on that. So take what I say with a grain of salt - verify with your onc!!!
Also, I hate to say it, but ask them if rads is indicated due to the close margin at the chest wall.
((( I would get at least two opinions from rad oncs (not med oncs) on that. Personally, I would also ask if a baseline PET scan is indicated - it gave me peace of mind, but many docs won't order them unless you have positive nodes.
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wendymk2016i'm also in chicago and getting my care at NW. i havent met with rad onc here yet but i went to cleveland clinic for second opinion (path and onc) and they t hought i should have radiation due to close margins
my path says posterior margin for DCIS <1mm and for Microinvasive IDC >1cm. but i still had 14cm of DCIS and i am a small girl with small boobs so i need rads. i am assuming posterior margin is chest wall but i can swear i saw in a post describing posterior margin as skin.
anyone knows for sure?
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Isolated tumor cell is <0.2mm
micromets for lymph node is >0.2mm and <2mm.
Lymph node positive is >2mm.
So mine is still N0 (i+). It still be treated as node negative, but with an additional comments. Due to current prognosis, it is almost same as node negative.
Wendy
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