her2 positive & dcis help needed

I also had a large DCIS tumor which was er/pr- and her2+++.  I had bilateral mastectomy.  I was told that with a mastectomy and my age (35) the risks of chemo and/or herceptin outweighed the benefits.  No radiation was recommended as the margins were widely clear.  My onco did indicate that the no chemo decision was due to only a microinvasion (not even large enough to oncotype or size accurately) with wide margins; and the herceptin decision was due to the mastectomy and the risks v benefits analysis. 

Long story short - I did get the impression that had I kept my healthy breast, he would have recommended the herceptin even without chemo. So, if your mom still has breast tissue, the herceptin is being done to protect that.  Hope that helps some!

Vikram, I'll add my voice to what the others have been saying.  DCIS and Herceptin do not go together, at least not now, based on current medical knowledge and current drug approvals. 

Herceptin is not approved (in the U.S. and Canada - I can't speak for anywhere else) for those who have DCIS only.  As Julie mentioned, there are a couple of clinical trials underway on Herceptin with DCIS women, but none involve full dosage of Herceptin over the period of a year. 

Additionally, while it is very well established that HER2+ invasive cancer is more aggressive than HER2- invasive cancer, there are no definitive answers yet as to what HER2+ status means for those who have DCIS.  There have been a few very small studies over the years that have looking into this issue; about half have shown that HER2+ DCIS is more aggressive but the other half have shown that HER2+ DCIS is less aggressive.  The other interesting fact that adds to the confusion is that a higher percentage of DCIS cases are HER2+ (I've read 40% - 60%), vs. only about 20% of invasive cancer being HER2+.  No one seems to understand yet why this is.  So at this point, based on this knowledge (or lack of knowledge) it is very premature to treat someone with HER2+ DCIS with a very toxic drug like Herceptin.  

Now, if your mother has several microinvasions (small areas of invasive cancer, each no larger than 1mm) or a small invasive tumor in the range of 3mm or greater, that might be a different situation.  The presence of any invasive cancer, even a tiny microinvasion, changes the diagnosis - it is no longer pure DCIS.  And it changes the staging from Stage 0 to Stage I.  Given the aggressiveness of HER2+ invasive cancer, sometimes chemo and Herceptin are given to women who have several HER2+ microinvasions or a very small invasive tumor.  If that is the case for your mother then it still seems odd that chemo has not been recommended in addition to the Herceptin.

Here is a response from Dr. Susan Love to a question about DCIS and Herceptin:

http://www.dslrf.org/breastcancer/content.asp?CATID=15&L2=3&L3=7&L4=0&PID=&sid=132&cid=842

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Edited to add:  I don't know if the above link is working so here is the info from Dr. Susan Love:

Should I have my DCIS tested to see if it is HER2-positive?

HER2 status is not useful in guiding treatment for ductal carcinoma in situ (DCIS) because it is more common for DCIS to be HER2-positive than it is for invasive cancer to be HER2-positive (we don't yet know why this is).

Also, we have no data on treating women with DCIS with trastuzumab (brand name Herceptin), which is the treatment used for HER2-positive tumors. This is, though, an area of active research.

What a great daughter you are, helping your mom from so far away. Might you be able to arrange a third opinion by having her slides and pathology reports mailed to a specialist here? 

Thank you so much for your good wishes. The best of health to you and your mom.

Julie E

Vikram, you just made me laugh - probably for the first time today! 

Thank you, and good luck to your mother and yourself.

Vikram-

not only did I assume you to be a daughter, for some reason I inferred from your post - maybe because you posted your mom's diagnosis in the profile at the bottom, that you too had recently been diagnosed with breast cancer.  Well, thank you for setting me straight (pun) as to your gender and I am so glad that you are not also dealing with breast cancer at the same time as your mom. So please accept my apologies and I revise my statement - you are a great son.

Julie E

Vikram, well I knew that you were the son!    I happen to know someone - a male - named Vikram. 

Your mother being in India probably explains the difference in treatment vs. what would be done here in North America. But according to the Roche India website, Herceptin in India is approved "For the treatment of patients with metastatic breast cancer who have tumors that overexpress HER 2."  So even in India it appears that prescribing Herceptin to someone with pure DCIS is off-label.  Given the potential side effects of Herceptin, and the fact that it's not approved (and hasn't yet been shown to be necessary) for someone with HER2+ DCIS, I think getting another opinion from an oncologist in the U.S. would be a good idea.  If nothing else, this would give you information to present to the oncologists in India, so that you can question them more effectively about your mother's treatment.

Good luck and please let us know how you are progressing.

Vikram, it's good that you've talked to the U.S. oncologist.  As for what he's said, it sounds to me as though he's saying that no further treatment is necessary, although your mother could take Tamoxifen, if she wishes, to reduce her risk of a new breast cancer in her remaining breast.  This makes some sense.  Once any of us have been diagnosed with BC one time, our risk to get BC again goes up.  This isn't a recurrence, but a new primary BC, unrelated to the first diagnosis.  So, even though your mother's BC was ER-/PR-, Tamoxifen wouldn't be prescribed to address this cancer - it would be prescribed to address the fact that she is now considered "high risk".  And a future BC would not necessarily also be ER-/PR-; in fact, since most breast cancers are ER+/PR+, it's more likely that if your mother is diagnosed again, next time the cancer will be ER+/PR+.  So Tamoxifen could help reduce this risk.

I too had a single mastectomy and my oncologist presented the option of taking Tamoxifen to reduce my risk of a new BC.  He actually recommended against it, saying that he felt that for me, the risks from taking the drug would outweight the benefits, but he left it to me to decide.  I did a lot of research and ended up agreeing with him, so I opted out of taking Tamoxifen.  Just guessing but from what I've read on this board, it seems to be about 50/50 in terms of whether or not women with single mastectomies for DCIS choose to take Tamoxifen or not.  It's certainly not necessary; it's just an option.

It would be great if your mother joined a support group, but she has to do what she feels comfortable doing.  And if she's happy with the decision to not have reconstruction, that's good too - in the end reconstruction usually works out well but it's often a long process and there can be complications and often revisions are needed.  If your mother has decided that she doesn't want to go through all that, that's a perfectly logical and sound decision.  There's no one "right" decision here - it's all a question of what's right for each of us as individuals.  What's most important is that your mother herself be happy and at peace with whatever decisions she makes.