calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Thanks so much BarredOwl - I am SO happy you are here, staying current on the latest NCCN guidelines, and continuing to support new members!!!! It's a relief to me to know you are here helping us all stay current!
The tumor board suggestion is excellent! I had totally forgotten they had done that for my case. I think I obtained 4 opinions regarding chemo - even flying to see a specialist in small tumors at MD Anderson. I was so confused and distraught about what to do. It is such a hard decision. Multiple opinions are definitely in order when the recommendations say to "consider". It's not black and white, unfortunately.
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I had a woman write to me for advice. She was a friend of a friend who had small 5 mm tumor but was Her 2 Pos. I begged her to get a second opinion at an NCI designated cancer center as she was ready to start chemo and Herceptin. Finally, she did go for the second opinion. The new hospital re-checked the Her2 results and she was negative not positive. No chemo.
Hospital errors are really scary.
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I received my tie breaker opinion at USC and oncologist there reiterated the recommendation of City of Hope, not enough benefit of Taxol/Herceptin to microinvasion which is 0.7mm. This time I did ask about Herceptin only and the response was for someone who was physically fragile and would have greater benefit of receiving something vs nothing, yes Herceptin only could be given. As for Perjeta, the short response was that this medication is indicated for those with metastatic HER2+ and my husband mentioned that Perjeta and Herceptin are made by the same manufacturer. I completely forgot about the tumor board suggestion!!! USC oncologist said she has given chemo for patients with tumors as small as 2mm, along with the fact that the patient was very focused on receiving treatment and she confirmed that UCLA pathology lab will do more cuts of the specimen than the typical standard. This USC oncologist is originally from UCLA. I am thinking about requesting an opinion from Dr. Michael Lagios and my husband suggested going to MDAnderson, Cleveland Clinic, or Sloan Kettering. I may still seek Dr. Lagio's opinion but I think I have neared my comfort level of believing that I am physically okay.
At the very least USC oncologist was willing to see me in 6 months and she even recommended seeing the breast surgeon on a regular basis. However no imaging studies or labs were recommended for monitoring purposes unless an issue arises.
On a very positive note a friend sent a Wall Street article about a metastatic breast cancer patient being cancer free due to immunotherapy little while ago...since it was Wall Street article, it wouldn't let me read the whole article without being a subscriber but below link is from an open source talking about the same topic.
https://www.msn.com/en-us/news/money/immunotherapy...
I will be posting the same info on the microinvasion HER2+ topic, so I apologize for the repeat information if you see my posting there too. Breastcancer.org was a bright light in my dark moments of diagnosis, so I hope to offer little bit of that insight to others who will find themselves here. Heartfelt thank you to dancetrancer and BarredOwl for their continuous support!!!
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So glad you received your 3rd opinion and are starting to feel comfortable with your decision! I know how hard this process is! Wishing all the best for you!!!
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Ditto!
BarredOwl
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Just trying to see how to put in my correct diagnosis without using the preset MyProfile options...
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diagnosed at the age of 46, 7/7/17 left 7.5cm DCIS high grade
8/25/17 bilateral mastectomy with sentinel node biopsy
left 7.1cm DCIS, high grade with 0.7mm microinvasion - hormone receptors negative, HER2+
right 1.4cm DCIS, high grade
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To Heartdesire......It's been quite a while since I've joined this group....but I think what you posted for your diagnosis is fine. Everyone will know what the "lingo" is....and if they don't...they'll politely ask.
ps. Happy that you have found this website.....sorry that you had to find this website.
BE STRONG!!!
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Dear Dacre - thank you very much for your encouragement!!!
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BarredOwl....can't thank you enough for keeping up with most recent guidelines. After finding this thread almost 2 year a ago, I decided to go with TH...I also had a bilateral with diep flap reconstruction due to family history (although negative for brca.
Thank you and dancetrancer for your dedication to this thread with current information!
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Hi Nolagirl 1126:
Thanks for your note and update!
BarredOwl
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checking in. Yesterday was my 10th cancerversary! I just fit in this group. My tumor was tiny 1.2mm ER+/PR-, HER2+. I had a Bilateral mastectomy No RADS, No Chemo, No Herceptin (it was unheard of to have herceptin & No chemo when I was DX- as I asked- Insurance would not have covered it)
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CONGRATULATIONS Dejaboo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Love hearing this long-term survivor update!!!!
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Dejaboo congrats! I always love hearing from long time survivors. I'll hit my two years in May. I am hoping I will be in your shoes in 8 years!
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thank you Cwhitney! I hope you post the same in 8 years!
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Hi Ladies. Just got my pathology report back after my surgery and confirmed that I’m HER+ With 5.5 MM (T1bN0, GRADE 3) Also had 4.6 CM DCIS GRADE 3. Meeting with oncologist next week at MD Anderson to see what treatment plan they recommend. Didn’t want chemo but maybe mine is still small that it won’t be required??? Thoughts anyone? Just want to get the appt over with.
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Welcome Mntx. I had a 3rd opinion with MD Anderson (they are awesome), and they recommended chemo with my tiny IDC (3 mm). So don't be surprised if they recommend chemo for you. Interested in seeing if they are still following the same protocol. Please keep us updated!
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I had 1.5mm of IDC, and 4 CM of DCIS. I still was recommended for Chemo. Good luck and keep us posted on your regimine.
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Mntx, I had 5mm of IDC, HER2+ and 26% ER+. This was close to 6 years ago, so options may have changed, but my oncologist offered me 12 weekly taxol + herceptin, or said I could forgo the chemo and herceptin since I was just below the 6mm threshold for generally recommending that treatment. I went ahead with it, and I’m glad i did after having more time to read about it. I wished I could have had herceptin without the chemo - maybe that is a possibility now. I did save my hair by using cold caps (as did dancetrancer) if that is a concern for you. Good luck with your appointment
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This month is my seven year canciversary. It just seems like a bad dream and have moved on with my life. I sometimes still get a little afraid it could come back but for the most part I am not too worried. Good to see you all and praying for all of you.
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I had 6mm tumor and some dcis and was recommended chemo and Herceptin. I was actually relieved since I wanted to throw everything at it and wanted the miracle of Herceptin. Like some of the other ladies, I had 12 weeks of Taxol (along with Perjeta) and a year of Herceptin. I hit my 2 year cancer anniversary and I'm enjoying life. I too get a little scared but I don't think about it nearly as much as I did. Yes, it is like a bad dream. Chemo was doable and not as scary as I thought it would be. Alliesmom congrats on your 7 years! It was nice seeing some familiar names that got me through my diagnosis!
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Congrats alliesmom on 7 years!!!!! I'm coming up on that this fall. It's definitely like a bad dream for me, too. So thankful.
For all you newbies, take heart - life does go on after treatment! You just gotta put your head down and push through - ya do what ya gotta do.
For all you "oldies" - thanks for staying on the thread and sharing to help! It's great to hear from you and also is inspiring to those recently diagnosed.
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Mntx - I had 6mm IDC and 4 cm DCIS in scattered pockets. Breast surgeon oncologist told me that they are trending toward treating smaller and smaller HER2+ tumors. I asked the question about Herceptin without chemo, and MO was firm. She said the Herceptin needs a chemo agent to get it started. After doing a ton of reading, this seems to be the norm with most targeted therapy. The dual combo is more effective. Herceptin is also effective alone but the chemo gives it a boost. There is a new study out of Germany supporting this.
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this is such a helpful board. Thank you. My post op path lumpectomy report came in 3mm no lymph and clean margins and HER2+. SO my BS indicated she thought no chemo but MO would make decision or recommendation. Readying the MD Anderson IVC Algorithm done in Feb2018 looks like heceptin and chemo recommended or at least to be considered even smaller than 5mm size tumors because HER2+ ......I really hate the idea of SE chemo and long term issues. I am 64 good health and wondering what are the chances of recurrence if don’t do chemo.....as for local recurrence I am ok but obviously want to prevent distance spread. throughts? Would love to hear about chemo experiences and how you get through it
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TTW as far as chances of recurrence I don't know the stat's (if they exist) on that, maybe someone else who is following the research lately can chime in.
My chemo experience with TCH (taxotere, carboplatin, herceptin) honestly sucked for me. I was pretty sick during it. However, everyone's experience is different, AND, most onc's are now doing Taxol X 12 + Herceptin for small tumors, IF they recommend chemo. That regimen is much gentler and easier to tolerate, from the experiences I have read about here.
You will need to see what your onc recommends. Every situation is different as they take into account your age and other medical history when determining if the risks of chemo+Herceptin are warranted. Keep us posted and best wishes!
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TTW - I think the risk for recurrence on the study at the 7 year standpoint was a 3% difference with Herceptin only, so adding the chemo gave a 3% boost. The study used mostly T1 tumor size patients and some T2. It was to aid in deciding treatment for elderly women who may have less tolerance for chemo. At 64 you are below the thresh hold. I think the age was 67 or 70. For smaller node negative tumors most algorithms give a 3% boost for chemo and Herceptin combo, with an added 1% for hormonal therapy if hormone positive. Taxol was relatively mild and doable, but there were unpleasant SEs including 50-60% hair loss (despite cold capping), some fatigue, mild neuropathy (despite icing), joint pain, some loss of taste, etc. A second opinion may help you make a decision with which you are comfortable.
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Ladies-thank you for telling me your story. I feel it is more likely that I will get chemo than not. Just scared. I no longer live in Houston so ive been traveling back and forth. I was hoping to do all of this at MD Anderson but since I now understand that this is a very long treatment program I can't live there for year. Has anyone ever traveled every three weeks to get the treatment done and flown home
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Dear Mntx,
Following my bilateral mastectomy last August, I was found to have <1mm microinvasion which tested HER2+ on the left and DCIS on the right. I saw an oncologist at UCLA, City of Hope, and USC. UCLA oncologist advised Herceptin/chemo but the other 2 oncologists recommended no further treatment. No further treatment is probably what I wanted to hear, so that is what I went with. But even few weeks before the mastectomy, I was having aches and occasional sharp pain here and there and it was such a burden to not to overreact but I ended up constantly thinking of these symptoms and second guessing whether I should have had He
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5 year initial diagnosis cancerversary today! A couple more months of tamoxifen and annual mammograms and checkups will be my future treatment. I never had radiation, chemo, or herceptin. There is light at the end of the tunnel and a future beyond BC. Fears of recurrence no longer dominate my life, and my doc visits seem routine. All the best to all!
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Congratulations on 5 years Rosamond!!!!
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Rosamond why did you not have herceptin since you are +++
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