HER2

agada

Good Morning,

Is it normal NOT to have a HER2 run with DCIS pn0(i+) results?  Just curious.

Thanks.

Agada

Beesie

Agada, you didn't have a microinvasion and it's the HER2 status of invasive cancer that is important. A large percentage of cases of DCIS are HER2+ but HER2 status can change as the cancer evolves to become invasive - a much smaller percentage of IDC is HER2+.

Although you had isolated tumor cells (ITC) in two of your nodes, the number of cancer cells found was so small that this is still considered to be N0 - node negative.  And without any invasive cancer having been found, officially your diagnosis is still pure DCIS, Stage 0.  If a microinvasion has been found, then with the ITC, it probably would be important to check the HER2 status of the invasive cancer, but with no microinvasion, checking the status of the DCIS might be interesting but it really wouldn't provide any actionable information.  For Stage 0, there is currently no difference in treatment between those who are HER2+ and those who are HER2-.  

agada

Oh, thank you once again Beesie.

Agada

sweetbean

Beesie,  I have a question for you.  When I was initially diagnosed, my HER2 test came back 0-1+, so my onc did not order the FISH test.  I did ACT and then had surgery.  There was some tumor left and that tested at 2+, so my surgeon sent for the FISH test, which came back 2.5.  I started Herceptin immediately.  I know the threshhold for HER2 is 2.2 - since I am 2.5, is my Her2 less aggressive?  Or does that not matter?  Thanks in advance!

Beesie

sweetbean, sorry I can't help you at all on that.  I only know about HER2 in relation to DCIS and DCIS-Mi - and in those situations, HER2 status basically isn't meaningful (based on current medical knowledge).  So when you get into discussions about invasive cancer HER2 - where it really is meaningful - I'm at a loss.  If you haven't already done so, I'd suggest that you ask your question in the HER2 forum on this board.  I'm sure that there are many women there who can help you. 

Estepp

I want to add here...

Beesie... I had IDC........ I had no idea that Her2+ was more rare for ladies like me. I did not know that DCIS was more Her2 dominant. Thanks for your knowledge... and sharing it !

Laura ( sorry for robbing this thread....:(   I was Her2 myself and am always looking at threads with this title. ) Good new is. I was IDC and highly Her2 in 08.... Today. I am three years out... and doing GREAT! You can do this!

Beesie

Estepp, from what I recall reading, approx. 20% of IDC is HER2+.  Most studies on DCIS have shown that at least 40% of cases are HER2+ and I've read some reports that suggest that the number could be as high as 60%.

Here's an interesting paragraph talking about this:

Another well-studied marker is HER2, an epidermal growth factor receptor family member. Small studies of HER2 in DCIS have typically demonstrated expression in more than 40% of DCIS patients overall, with a much higher percentage of patients with comedo/high-grade DCIS expressing HER2 than of patients with noncomedo/low-grade DCIS. HER2 expression is found in more cases of DCIS than in invasive cancer. Women with invasive cancer whose tumors express HER2 have a poorer prognosis than those whose tumors do not express HER2, and the higher incidence of expression found in a noninvasive condition such as DCIS may therefore seem paradoxical. The incidence of HER2 expression in invasive disease may reflect reduced expression when DCIS progresses to invasive cancer, or it may reflect the fact that most invasive cancers develop from DCIS tumors that have low expression of HER2 but high proliferative rates. Because such tumors progress rapidly, they are in the DCIS stage for only a short period and would therefore be underrepresented in population samples. HER2 receptor activation via autophosphorylation is also higher in DCIS than in invasive cancer, possibly indicating a role for HER-2 in tumorigenesis.  Source: Ductal Carcinoma In Situ, Complexities and Challenges   

There are more recent articles and studies on this but none seem to be any closer to explaining the difference in HER2 expression between DCIS and IDC. From what I've been able to find, so far there still are only theories as to the reason why.  

Estepp

Thank you. Now I understand more why my oncologist just told me  that I now have  98% survival rate... compared to under 3 yrs. Due to the fact I had IDC and highly Her2. +++.

cummin

I was IDC Her2+ and grade 3 in 2003,  I had chemo, radiotherepy and Herceptin for 20 months and Im still here! I have lost 2 cousins since to Breast Cancer and now I have a large Meningeoma in my head!!Anyone one else with this?

GIOSGIRL

Hi fellow HER2+ Sisters!

Has anyone forgone the Chemo only had Herceptin and Tamoxifen and made it to 10 years without reoccurance? so confused by this HER2+ business. Stage 1a, Grade 3 ER+ Pr- HER2+ is my situation. Had a lumpectomy with 2 nodes that were clear and 1.8cm tumor. Any Kaiser members out there that were able to just have Herceptin without Chemo? 

Mahalo for any feedback and God bless everyone in this war against BC

Lori

Eileen73

GiosGirl, we are on the same boat. I keep asking the same question.

I am tripple +++ and refused chemo, I want to refuse herceptin as well if I can find anyone survided it with alternative.



Anyhow oncologist usually gives herceptin with chemo, did you fnd any ocologist willing to give you herceptin alone?

PamelaK

Hi ladies,

Sorry for the dumb question but does it specifically say on your pathology report HER2 positive?  My report states that I'm estrogen and progesterone positive but no mention of HER2.  Does that mean I'm not positive or just that I wasn't tested?  I'm still trying to figure all this out. 

SpecialK

giosgirl and eileen - it is difficult to find an oncologist who will give you Herceptin without chemo unless you have an overriding co-morbidity that prevents receiving any chemo drugs.  My understanding is that if it is done, it is usually in older patients.  The reasoning behind this is that when the trials for Herceptin were done it was determined that Herceptin worked in a synergistic manner with chemo and was more effective in combination.  The trials support this so oncologists are not usually apt to prescribe a drug regimen that does not have as well documented a benefit.  I believe that trials using Herceptin alone, and also length of treatment, are now ongoing. That being said, Herceptin has not been available for that many years for early stage patients, and some percentage who were early stage Her2+ and did not receive it, because it was not being used, certainly survived.  Statistics from the Herceptin trials indicate that reciving it, with chemotherapy, cuts your recurrence approximately in half.

pamelak - do you have pure DCIS, DCIS with microinvasion of IDC, or IDC?  Sometimes there is a delay for the Her2 results so they come on an amendment of your pathology report.  If you have pure DCIS it may Her2 testing is not done because there is no net effect on treatment even if you are Her2+ - this is fairly common.  Depending on the size of microinvasion, the same logic may be followed, or the sample may be too small.

Annette47

Pamela - most likely you weren't tested; many docs (my own included) don't test DCIS for HER2 as it's significance in DCIS is unknown.  In my case, the invasive component was too small to test as well, so I have no idea my HER2 status.

I think Special K and I were posting at the same time!  In other words ... what she said!

shelleyt

i am her2 positive 3+ er/pr +, microinvasion, had bilateral mastectomy jan 8, 2014 12 weeks of taxol and herception now just herceptin every 3 weeks. the herceptin has caused my mouth to go numb, the roof of my mouth, tongue, teeth, gums, throat, cheeks eye lids, nose and i have gone to the emergency room twice and have had brain scans done and my onc says she doesnt think its the herceptin, well its the only meds i am getting, the numbness isnt getting better its getting worse. is there any one else out there that is having numbness in the face and mouth? i am going to go to the emergency room again tomorrow. i am so upset, i cant deal with this numbness and the docs saying they dont know why, and they have never heard of this from anyone else with herceptin.

Gingersnaps1

Shelleyt, I am on Herceptn and have not experienced and mouth numbness. I am stage 2a (grade 3) DCIS her 2 positive. I have been doing chemo for 4 months, and am almost done: I have my last chemo on 1/12/15. I am then scheduled for a Masectomy. I hope you find the cause of your mouth numbness.

Gingersnaps