Micro-invasive DCIS that is her2+++
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I am just wondering for those of you that are DCIS with Microinvasion and HER22+++ that did not do any chemo, RADS or Tamox, how often do you see your Drs and or Onc? Do you reiceve any bloodwork? Who do you see most, GP, Surgeon, PS or ONC?? I dont want to get lost in the shuffle of them all. I am going to see my ONC one time a year but dont know what I should be doing in the in between stage, if anything.
Thank you!
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I am just wondering for those of you that are DCIS with Microinvasion and HER22+++ that did not do any chemo, RADS or Tamox, how often do you see your Drs and or Onc? Do you reiceve any bloodwork? Who do you see most, GP, Surgeon, PS or ONC?? I dont want to get lost in the shuffle of them all. I am going to see my ONC one time a year but dont know what I should be doing in the in between stage, if anything.
Thank you!
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I saw my Onco for 2 years. 1st every 3 months, then 4 months & then They were pushed out to 6 months & that is when I decided not to go back
I saw my GP in between for a yearly check up
My Onco didnt do tumor markers or scans...She just asks me how I feel & does a bad breast exam ( I can do one better then her) Then she tells me if I have any symptoms to make an appt.
after my last check up almost 2 years ago I decided to skip seeing her anymore. if I have symptoms that arrise I wil make an appt.
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I just had a double masectomy a few weeks ago for Dcis with her2 positive micro invasive cancer, the largest being .5mm. Two different opinions showed two different answers. One said to have chemo (TC) for 4 rountannin 12 weeks and herceptin for 1 yr for fear of it spreading later in life. I am only 35 but lost 6 family members to breast cancer and my mom Has metastatic breast cancer. They said the slides showed it "sprouted" in many areas microinvasively. The other thinks that is excessive and said I could do herceptin due to my age and family history. These are both top hospitals from NYC. I am so confused and am considering A third opinion. They both give me a good success rate but I know how aggressive her2 positive is if it came back. I have three little girls 6 and under and want to be around for them. I'm scared of the side effects of chemo, but also scared of the aggressiveness of cancer. Ugh!!!
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Momof3girld: I'm so sorry you are in this situation!!! You will find lots of support and information here. You don't say if you are ER/PR +. If you are, you may want to join the TRIPLE POSITIVE thread. It's very active and very informative. You are in a very difficult time right now, but please know that it WILL get better, especially when you come to tour own decision on treatment.......get a third and even more opinions until you feel confident in your decision.....then, "fight like a girl!". I pray you have a strong support system where you live! Blessings!
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Mom, was your largest microinvasion really just 0.5mm? Not 0.5cm or 5mm? I didn't think that they could test for HER2 status on something as small as 0.5mm. If your microinvasion really was that small, you should check to see if it was actually the invasive portion that was checked for HER2 status or the DCIS. If it was the DCIS that was tested, then it's not surprising that you are HER2+, since about 40% of DCIS is HER2+, whereas only about 15% - 20% of IDC is HER2+. Hormone status, including HER2 status, can be different in IDC vs. DCIS, even within the same tumor. I don't think it happens often but it can happen.
This thread hasn't had much activity lately but there are a couple of other threads on the board where the women with very tiny HER2+ invasive tumors have been hanging out. You might get some good information from these threads and you'll be able to connect with others who've had a similar diagnosis to you, and who've had to make the same hard decision about chemo.
Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Yes it is .5mm which I know is very small. They give me a 90percent survival rate but I'm still so scared. The Dcis was very long with her2 positive in it that was micro-invasive. I am torn. If I don't do chemo I'll kick myself later possibly, but I'm so scared it will hurt me.
I will check out the other sites that were mentioned.0 -
I'm so confused about all this. My path report states, "although there is no diagnostic/unequivocal evidence of invasion, several free-floating fragments of ductal carcinoma with low to intermediate grade nuclei are identified which are not associated with underlying stroma. It cannot be determined for certainty whether these fragments are obtained from an in-situ or invasive carcinoma. Futhermore, the prognostic marker results demonstrating a Her2-neu postive, ER and PR negative proflie would be rather unusual for a conventional low grade ductal carcinoma in-situ.
Does this mean that the cancer may have spread? Or since I'm having a BMX does if get rid of it all?
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kawee-
I also have Lupus. Luckily, mine has been inactive for years. I'm worried that the stress of all this will cause a flare -up. I've been much more achey and tired and have been having hot flashes but it could just be the stress. So, are the doctor's recommending that you stop the hrt and just watch the DCIS? I am having a BMX next month.
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Hi Mom of 3
I had grade 3 DCIS HER2+ and IDC grade 3 DCIS HER2+.
My oncologist said that in his opinion, HER2+ trumps everything, so I am in the process of having the full works - surgery, chemo, radiation and Herceptin.
Chemo is doable. Please don't let fear put you off from having it. I had 4 X FEC and 4 x Taxotere and although I had a few side-effects I am here to tell the tale.
Good luck to you!
Alice
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Hi Teri,
I was reading your thread. I had a pbmx on Tuesday the 7th. I came home Thursday evening. I am doing well. I had no problems wiping after a bm. My doctor prescribes milk of magnesium to help with constipation. I also used a hand held shower head to freshen up down there. I took my first shower a day after surgery. I removed the surgical bra and pinned my drains on a bath towel wrapped around my neck. This covered my implants. I carefully washed my hair with Johnson's head to toe wash. The towel around my neck helped to absorb the water from touching my skin. I gently patted my front and put the surgical bra back on. The shower will make you feel great. I am sleeping on an L shaped couch. I have my head propped up in the corner with pillows. The couch is low to the ground and easy for me to get up and move around. I hope this helps.
Xo
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My wife had her breast cancer: She had received mastectomy(right) on 4 May, 2012 in the local hospital. The mecical examination result is DCIS, ER(-), PR(-), Her2/neu(-),0/19 lymph node. The doctor didn't think she should receive chemo. However, the authorized big hospital re-examined and gave the different results: Microinvasive localized breast cancer (high grade), ER(-), PR(-), Her2/neu (3+). The doctor suggested that she should receive chemo (EC) and herceptin. About 90 days after the surgery, on August 5, 2012, she began to receive chemo.Now she is still receiving chemo.It's time we should decide whether she should receive herceptin or not. We are searching the Internet for any information about it. We are very happy to find your forum. Would you please help us to decide whether it is necessary to receive the treatment with herceptin. By the way, is the treatment with chemo 90 days after the surgery effective? Thank you for your answer.
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Liz08:
I submitted my request a few days ago. I am eager to receive a reply. However, a few days have passed, nobody has sent a reply. Liz08, can you help me?
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Luis, I just saw your post. Sorry that no one has responded so far. This forum is not very active and I'm not sure when Liz was last on the board.
There is another forum on this board where you will find a lot of women who are in your wife's situation. It's the HER2/neu Positive Breast Cancer forum. And here is one of the discussion threads in that forum that specifically discusses very small HER2+ tumors and the treatment plan:
Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
I'm sure you will get a lot of good advice if you post your questions in that forum! It's much more active there than it is here.
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Thank you, Beesie. I'll refer to the forum you mentioned.
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Hi there,
This is wonderful to read about other women in the same circumstance. I am 36 and just completed a bilateral mastectomy. The tumour was microinvasive (10 locations less than 1 mm). It was recommended that I just have radiation, which I have just started. I am Her 2 + (95% staining so grade 3).
It was not recommended that I have chemo. I asked about just taking Herceptin and I was told this is not allowed in Canada. Does anyone have any information/studies about taking Herceptin without chemo??
Thanks!!
Heather
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I had the same circumstance...what did you end up deciding? How are you doing with your decision?
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Hi Heather,
It has been a while since I've been on the board. It has been 3 years since my diagnosis. I was 40 and also had a bilateral mastectomy. I had 4.5 cm of DCIS and 1 microinvasion of IDC, less than 1 mm. I did not have further treatment and I think that chemo and herceptin are not usually suggested for people with microinvasions less than 1 mm, even if they are Her2+, grade 3. I am sorry that I don't have the latest information on whether Herceptin is available without chemo, but I'm sure you can find that on the board somewhere. Maybe you could try searching "herceptin without chemo". I hope this helps a little. ~Amy
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I am the same as Amy, with a pretty close DX. I opted for no treatments as well.
My first onc suggested one year of just Herceptin alone or 6 months with Chemo.
I had 3 different opinions and went with the majority.
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HI, I think I belong in this group, as I have DCIS mi, HER2 +++
But, just discovered I also have an invasive cancer that is ER+. Where does that put me?
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Zappons, do you have two different areas of cancer? Or cancer in each breast? Or is the invasive cancer a second diagnosis, sometime after the first? Is the invasive cancer also HER2+++?
Our diagnosis, staging, treatment and prognosis is always based on the most serious of our conditions. So since you have invasive cancer, that trumps DCIS and DCIS-Mi (I'm assuming that the invasive cancer that you've mentioned is more than just the microinvasion that was found as part of the DCIS). Other than removing the DCIS, the assumption is usually made that the DCIS will be adequately treated by any treatments you have for the invasive cancer. In your case, however, if in fact you have two completely separate diagnoses, and one is HER2+++ and the other isn't, that could change things. But as has been noted in this thread, usually Herceptin is not recommended for those whose HER2+++ cancer is only a microinvasion.
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Hi ladies, I wanted to introduce myself here as I think this is where I belong...finally....after 5 LONG months.
I found my lump in September and the rollercoaster ride began. After ultrasounds, MRIs, PET scans, we thought my tumor was about 3.5 cm. The preliminary biopsy came back as DCIS with a micro-invasion and we also found one axilla lymph node positive.
The PET scan also showed a 2cm lesion of some kind on a rib and the doctors didn't know what to think. They didn't think it was a met, but they couldn't totally rule it out until after chemo. We decided to go ahead with neoadjuvant chemo since I was Her2+++ and I had an infected lymph node.
I finished the AC/T regimen and proceeded to have an MRI which showed no life in tumor or nodes, and the lesion on my rib was grossly unchanged. That led my doctors to believe the spot on my rib was benign. I had a lumpectomy and sentinel node biopsy. The pathology report came back as a pCR. I was FINALLY staged as T1mic N1.
For four months I was worried sick that I was stage IV out of the gate....What a relief finally having the pathology report in front of me. I'm glad I had the neoadjuvant chemo, but waiting for the report is difficult beyond words!!
Awaiting rads now and a year of herceptin....but there is finally light at the end of the tunnel!
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If you're about to start Herceptin, I suggest you get a baseline serum HER2. You can ask your doctor, but first you might read this link: www.labtestsonline.org/understanding/analytes/her2neu/tab/test Show it to your doc--it comes from the AACC, and most oncologists are not aware of AACC. Also, you might browse through the Web site www.hertestonline.com Good luck!
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CameraKim....what a relief!!! Its good to hear good news! Good luck on your treatment.
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CameraKim Good news, but I am a little confused.
I see you had neoadjuvant chemo. Did you have this for the Microinvasion?
Or was your IDC originally larger?
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Hi Dejaboo,
It's really confusing to us too. I think they chose neoaduvant for two reasons....I am Her2+++ and I had node involvement.
The biopsy from my tumor before chemo showed a micro invasion, but I think the doctors thought it must be more than that because it was in my lymph node. We'll never know for sure because I had chemo first. But after my lumpectomy, the pathology came back as DCIS with an invasion to the lymph node...my breast surgeon thinks it was a micro invasion after all. I want to go back and talk to clarify. It is all so confusing.
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So they did an SNB at the time of biopsy? Not sure I understand, b/c that is not the usual course of action. Usually it's biopsy of the breast with no SNB. If IDC in breast is found via biopsy, and it is felt to be large, chemo first to shrink it. Then usually lumpectomy with SNB. I think. I'm confused about your case, too!
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CameraKim I am thinking they did the Chemo because of the node. Although micro invasive they didn't want to take a chance once it's in the nodes. No matter how micro invasive! I'm glad you found your place here but it's a very small group as few of us meet this criteria. For me it's just the Drs belief that I'm triple neg & they didn't test my Her2 as it was too small to test & also the risk on my heart didnt warrant even testing. But they were worried about my nodes as one showed funky on the mammo & MRI. They told me that would change the whole treatment plan if they found a few cells in them. I'm glad your seeing the light at the end of the tunnel!
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Dancetrancer,
I had a tumor biopsy that showed micro-invasive cancer. Because of that, they scheduled a MRI for me which showed activity in an axillary node, it also showed a 2cm spot on a rib which they were afraid could be a met. So, a PET scan was in order. The PET scan again showed activity in a node so they did a biopsy. Although the biopsy of the breast tumor showed a micro-invasion, the node invasion was greater than 2mm.
The grade of the tumor and the her2 status, along with the node invasion made neoadjuvant chemo necessary. At that time they didn't know what the lesion was on the rib. Their plan was to watch it and see how it responded to chemo. Thank goodness, after dose dense chemo it was grossly unchanged.
I saw my breast surgeon a week after lumpectomy to check on the healing. She had just recieved my pathology that morning, and although she said she wanted to read another time...she thought it was highly unusual and a case that should be written up in a medical article. I am still not sure why she said this. I need to go back and sit down with her again.
Here is my final pathology:
Tumor type: DCIS
Invasive Carcinoma: Not applicable
Histologic type: Solid to cribform
Grade of DCIS 2-3
Prolifercation Rate (mlb-e1) High
Necrosis in DCIS: YES
Lymphovascular invasion: Not identified
Lymph Node status 1/5
Stage pT1mi, pN1
Does that make sense to you? Not sure if it makes sense to me...still lots of questions. My tumor was fast growing and aggressive. She said if it hadn't made it to a lymph node I'd be stage 1/2. Instead I'm IIa. Thinking about that, it might mean this forum is the wrong place for me. Can't figure out quite where I belong
DCIS 3.5 cm with micro invasion; T1mic N1; ER-/PR- Her2+++ 1/5 nodes; pCR after neoadjuvant chemo
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So interesting. My guess would be when they did they MRI and saw the hot axillary node and the rib spot they couldn't be sure it wasn't a MET. Often they don't do breast surgery in Stage IV (I think, I could be wrong though as I'm not as well versed in Stage IV). So, my guess is that they did the chemo thinking if the rib spot went away then you were stage IV. ??? Since it didn't, it wasn't a MET (thank goodness), so they did surgery and didn't find any more cancer b/c of complete pathological response. If they had done a lumpectomy or mastectomy before chemo, they may have found more invasive cancer (the cause of the positive node)...but since you had chemo first, you will never know I guess. Good thing is, it's gone, you did aggressive treatment and kicked it hard! Congrats!!!
Staging is very complicated and hard to understand sometimes, especially in a case like yours. Take a look at the link below. If you study the tables, you'll see stage IIa is given once you get a positive lymph node that is both axillary and internal mammary chain. So maybe that explains why she said you are stage IIa?
I think. That staging stuff is complicated! Maybe print out the tables and get your onc to explain it to you better.
http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page3
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