Micro-invasive DCIS that is her2+++
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Hello...I wonder if anyone can comment on how accurately small microinvasion can be tested for HER2 status? I had bilateral mastectomy with sentinel node biopsy on 8/25/17 and DCIS 7.1cm on the left with 0.7mm microinvasion and during the estrogen testing, it seems the sample basically just disappeared according to the medical oncologist who spoke to the pathologist. Pathologist was also unable to definitively say whether it was the microinvasion which tested positive for HER2 (FISH) and not the DCIS as the sample they took may have gotten some DCIS as well. I guess one way to help figure this out would be to test DCIS itself and if HER2-, then it would be the microinvasion which tested HER2+. Of course if DCIS is HER2+, then back to square one.
I will probably end up requesting a second look at the pathology along with a 2nd medical oncology advice but I was wondering about anyone's input about testing for something so small.
Also in regards to Taxol/Herceptin, anyone receiving or have received modified/less than the standard regime of 3 months combined and 9 months of Herceptin? I tend to be hypersensitive to medication's effects, so I wonder even if I decide to go this route whether I will be able to tolerate it.
Thank you very much!
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I posted on a different topic but just in case my experience may help shed some light...
8/25/27 bilateral mastectomy with sentinel node biopsy, no reconstruction
pathology showed:
left breast 7.1cm DCIS, high grade with 0.7mm microinvasion which was HER2+
right breast 1.4cm DCIS, high grade
UCLA oncologist recommended Taxol/Herceptin as extra insurance
City of Hope oncologist said no further treatment and no labs/scans for monitoring and only self exams/physician exams unless an issue arises due to risk/benefit of such a small invasion
USC oncologist concurred with City of Hope's recommendation
When USC oncologist was asked about taking Herceptin only, her response was for someone who was physically fragile and would have greater benefit of receiving something vs nothing, yes Herceptin only could be given. But Herceptin is not effective without the synergistic effect of chemo. As for Perjeta, this medication is indicated for those with metastatic HER2+
I forgot to ask if my case can be presented to a tumor board but I have reached a certain comfort level of not pursuing further treatment.
Everything about breast cancer is scary but I think the most intimating is metastatic breast cancer. So on a 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 with what I presume is the same article.
https://www.msn.com/en-us/news/money/immunotherapy...
Once again thank you for those with past experiences who have guided and continue to guide us newbies along.
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Hello,
I've had a bit of a roller coaster with my diagnosis -- initially DCIS in the left breast (9 cm, pr/er negative, HER2 not tested), no lymph involvement. They could see on the MRI that I have a lot of "reactive" lymph nodes, so my BS has been saying that my case is not straightforward.
Had a unilateral mastectomy (I'm BRCA1&2 negative) with 8 nodes removed on 9/25 and was told my lymph nodes were clear. Then pathology came back that 1 lymph node had a micro-met of 1.2 mm that is pr/er negative, HER2 positive. The analysis of the breast tissue and large DCIS mass didn't find any invasive disease, but the pathologist comments said "assume microinvasion is present in unsampled tissue." My BS sent the tissues off for second opinion but I haven't heard back on that. Meanwhile, I met with an oncologist and they are saying I can choose between TCH (4-6 cycles every three weeks, Herceptin for a year) or Taxol + Herceptin (every week for 12 weeks, Herceptin for a year).
I'm not sure which way to go...if feels like I "barely" have cancer -- but of course I'm worried about recurrence. The DCIS came up very fast. I had a mammo last year that found nothing, then this summer my left breast grew very fast, and that prompted me to go in early for a mammo (which of course turned into biopsy, MRI, etc.). I'm 41 with two small kids (5 and 7) and work full time...there is never a good time to deal with cancer for anyone, but the timing for me is about as bad as it can be with everything going on in my life right now.
Any advice on TCH vs. Taxol + Herceptin? I've read about them as treatments, but it's not clear to me how they compare to each other in terms of reducing the rate of recurrence.
Heartfelt thanks,
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Heartdesireslife,
If you will not receive systemic therapy, what kind of screening will you have on a go-forward basis? Are your breasts dense? Mammograms are notoriously poor screening tools for dense breasts. MRIs are more effective.
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I have very dense breasts (well, the remaining breast), but my insurance will not approve MRI. I had a mammogram last May. The results were benign, but I don't feel relieved at all.
I really feel like I should be getting an MRI. I'm not in an income bracket where I could afford to pay for one out of pocket without creating hardship in other areas.
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BCwithBC45 do you mind revealing your insurance carrier? I have had yearly MRIs since 2008 and I'm scared of changing carriers at work since my current carrier has always covered. Perhaps it's because I definitely had an invasive component - although small at 3 mm.
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JoniB,
I sent you a private message.
BB
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Dear Stephincanada,
Going forward nothing other than monthly self palpation check, about 2 weeks following the start of my period and once a year or twice a year physician palpation check of the underarms and chest area. So no mammogram, ultrasound, or MRIs or labwork checking for cancer markers unless new symptoms/changes.
Another writer had written in about seeing their breast surgeon twice a year and seeing their oncologist twice a year, separated by 3 months...so every 3 months there is an exam by breast surgeon or oncologist. That schedule makes sense to me. So I'm going to try that but instead of breast surgeon, my thinking is with an OB/gyn.
BBwithBC45, I would think insurance would approve at least the initial MRI but if even the initial MRI was denied, then a mammo + ultrasound may work for the dense breast for the extra assurance. Ultrasound is much cheaper than MRI with contrast, so I think there will be higher chance of insurance approving it.
Lara0729...getting that 2nd pathology review sounds like the right thing to do and I got 3 different oncology opinions about chemo, so maybe at least a 2nd medical oncology opinion would be good for you despite everything else you need to juggle in your life. Also I learned the hard way, it is profoundly advisable to seek the experts from larger institutions rather than smaller near home facilities despite the convenience. Wishing you the best on this rocky journey!
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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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Hi, i know this is an old post but was hoping for a little more info. Diagnosed with dcis grade 3 er+pr-her2 positive .5mm microinvasion. Age 45. Lumpectomy Oncologist is taking to tumor board regarding treatment. Based on what i read here same diagnosis and if i interpret this correctly no treatment?
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Dear Heaterc,
Because you have estrogen positive microinvasion, I wonder if the anti-hormone therapy would be recommended for you. Also for me personally from 3 oncologists - one said yes to chemo/Herceptin and 2 said no. I'm almost one year out post mastectomy and I went with the no treatment advice.
I think it is great that your oncologist is consulting a tumor board. But if possible maybe you can consult a 2nd oncologist from a different cancer facility.
Wishing you great peace!
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just wondering if this discussion is still active
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Hi All, just want to introduce myself and looking to connect with others with DCIS with microinvasion. I had bilateral mastectomy on Dec17 (left breast had extensive DCIS, right breast prophylactic). The surgeon called me last night and said they foind two spots each less than 1mm with invasion which tested ER/PR negative and HER2 positive. I am about to meet with two oncologists but the surgeon told me in her practice she has not seen chemo and herceptin recommended for such small invasion. No lymphatic and no blood vascular invasion, clear margins around the IDC, close to the skin for the DCIS. I am 31 and i am very very worried about the HER2 and the fact they were two spots. Has anyone been given chemo for similar diagnosis? Thanks
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Mine was 3mm, much larger than yours, but my DCIS was 10cm. You can ask about herceptin alone, but it is quite expensive, and your insurance might not approve it.
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Hi MCBaker, i see you did taxol and herceptin. May i ask what was the recommendation based on-the size of the IDC solely or anything else. I read that Herceptin alone ha not been proven to be very beneficial without Chemo. And you are so right about cost of herceptin if its not approved by insurance, its scary
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Based on HER+ status. If it had been hormone positive and HER negative, it would have been pills, Onco said that there is no other choice. Given how nasty HER+ is, a ten percent chance of recurrence is not worth the gamble. It is early, but I wish we would have gotten it earlier, in just DCIS grade three, stage 0. Then just mastectomy would have worked.
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I know this feeling- I felt devastated when i reveived the call that among the DCIS they found 1mm spot of invasion and its HER2+. Did you get second opinion on the chemo recommendation? I am planning to meet with at least two cancer clinics to compare opinions
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I am doctoring with the Mayo organization, so I don't think a second opinion is necessary. They do a lot of teamwork, presenting and discarding and deciding for each individual as an individual.
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Yeah, that makes good sense. I am going to Dana Farber in early January and i know they did a study on early stage her2+ for 12 weeks taxol and herceptin, so i am curious if this will be the recommendation for microinvasion as well. How are you doing with your regime so far? I hope everything is well
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Just begun. Not too much to report yet.
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I just wanted to say i had 4cm of DCIS and 1.5mm of IDC. I was at Beth Israel, but consulted at Dana Farber. It was recommended i do 12 weeks of taxol and a year of herceptin. Her2+ is nothing to mess with IMO. Good luck with your decision making...
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Thanks Tresjoli2, seems like we are homies
) i know her2 is nothing to mess up with but i was so hoping i could avoid chemo! How was taxol for you? Any long term side effects so far0 -
have u done any of taxol? Any Side effects?
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Hi-just wanted to post an update. I was seen at Mass General and Dana Farber this week and both oncologists said they will not treat me with chemo and/or herceptin for such tiny tumor because they believe that the risks outweigh the benefits.
I trust both hodpitals and in my opinion DF is one of the best cancer centers, but I keep reading about others with similar diagnosis who had Taxol and Herceptin and I am freaking out that I am not doing enough. Dana Farber told me my risk of distant reoccurrence is ~1-2% and I should worry to put a seat belt and sunscreen and try to live my best life without letting this tiny HER2 consume me.
I aksed why some patients are given chemo and some not and was told that chemo is person specific and they cannot discuss others treatment but maybe it was people with more focis for example. Needless to say, i am unease because i found numerous women with 1-2focis less than 1mm who had Treatment.
I am considering going for a third opinion. Do you think a smaller local hospital will be more likely to give me at least herceptin? I cant help but worry what if it comes back and i didnt do anything (besides mastectomy). That thought doesnt give me peace...
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Magicunicorn my first cancer diagnosis
was DCIS With 11 microinvasions all small and Her2+ I was also told no chemo. Only tamoxifen I was Er+ 5% and pr- my second breast cancer was they feel a different cancer diagnosed 1 -1/2 years later caught really early Er & pr negative so no treatment at all just dmx. Keep us posted how things go with you
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my tumor was 6 mm invasive and 1,5 cm dcis. Is 6 mm microinvasive ?
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hi
I just done M and my Tumor report show that I m pr-,er- ,her2+. Lymp node clear. CT scan clear.
Oncologist suggest to do chemo TC with herceptin. 4 chemo follow by 15 radiotherapy. The micro invasive area cover to 5cm area. Lump size is less thn 5mm.
I wonder is it the right way to go.. I emaiL other oncologist for second option but still waiting for the reply
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Hi everyone,
I am not sure if I should post on this board but I just been diagnosed 2nd time of DCIS and this time is on the right breast and the biopsy pathology report said "suspicious for lymphovascular invasion".
3 years ago I was on this board overwhelmed by the disgnois of extensive DCIS on my left breast and had a mastectomy followed by 3 years of tamoxifen. At that time I also underwent right side lumpectomy for ADH. I also have LCIS on both my left and right. I wanted to do a BMX but was talked not to by my surgeon. I wish I did…
This time I am scared as the surgeon suspect an invasive cancer somewhere but did not get caught by biospy and I am so scared of this suspicious lymphovascular invasion.
both times my tumor was intermediate grade solid pattern. last time was strong ER and PR. this time ER 60% and PR negative.
Anyone had DCIS and Lymphovascular invasion???? What is your treatment?
I have an appointment with MD Anderson on 10/24
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