I found something new to worry about....

Kkubsky

I have been freaking out about this whole cancer thing and comedo necrosis, etc. After reading and rereading facts about DCIS, I finally started to feel a little normal the last few days. Then I started reading about herceptin. I am starting to project all kinds of bad scenarios again. I wasn't tested for HER in my biopsy pathology, which at this point showed only DCIS. I am scheduled for my lumpectomy next week and that pathology will tell the whole story about whether I have anything in addition to DCIS. So now I am freaking out about HER.

I know I am being a pain in the butt, but I just can't stop being my own worst enemy.

leenso52

Hi Kk,

I don't know why we are not always checked for Her2. I wasn't. But even if +, there is a targeted monoclonal antibody drug named Herceptin that, if needed, and remember so far you have dcis only per biopsy, is very effective and has a low side effects profile. I don't know how often dcis would have both ER and maybe also PR positive AND Her2 positivity. I don't know, but I have a feeling I will be corrected.

BarredOwl

Hi:

As explained below, current guidelines do not require HER2 testing of apparently pure DCIS. You should not be concerned if your biopsy sample showed apparently pure DCIS (no evidence of invasion) and was not tested for HER2 status. Your management is within the current standard of care.

Pure DCIS can be either HER2 positive or HER2 negative.

However, pure DCIS, which is non-invasive, is not treated with chemotherapy or HER2-targeted therapy even if it is known to be HER2-positive.

According to background information from a 2015 article (citations omitted, emphasis added), in contrast with invasive disease, the ". . .prognostic significance of HER2 status in DCIS is, however, less clear. Both the relation of HER2 to risk of recurrence and its role in the progression from in situ to invasive cancer have been debated. HER2 over-expression is reported to be more frequent in DCIS than in invasive cancer."

Regarding HER2 testing practices in pure DCIS, in general, the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 1.2016) do not recommend routine assessment of HER2 for pure DCIS. Consistent with the quote above, this appears to reflect the current level of evidence regarding value as a prognostic marker in pure DCIS (unclear, weak), and that HER2-targeted treatments are not used in the pure DCIS setting (emphasis added):

"Although HER2 status is of prognostic significance in invasive cancer, its importance in DCIS has not been elucidated. To date, studies have either found unclear or weak evidence of HER2 status as a prognostic indicator in DCIS.(41-44) The NCCN Panel concluded that knowing the HER2 status of DCIS does not alter the management strategy and routinely should not be determined."

In accordance with the current treatment guideline, many patients with pure DCIS do not receive HER2 testing.

This might or might not change in the future, since it is an on-going area of research, and we may learn more from new studies about the prognostic implications of differing ER, PR and HER2 statuses in pure DCIS.

If invasive disease is later found at surgery, it may or may not have the same HER2 status as the associated DCIS.

Please stop worrying about HER2.

BarredOwl

Kkubsky

Thank you for a reality check! I apparently need them.

BarredOwl

Hi Kkubsky:

I understand what you are going through. It is hard. I asked my mother and mother in law to say prayers for me, for the best possible pathology results.

I also read up about "mindfulness", which can be helpful for learning to turn your mind away from unwanted thoughts or for calming yourself. The book "Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness," by Jon Kabat-Zinn, is an excellent source book about "mindfulness" available from Amazon (September 2013 Revised Edition) in paperback or kindle. The book is about mindfulness and dealing with stress, such as the stress of chronic illnesses or health conditions. The book is used to teach "mindfulness" in many hospital-based stress reduction programs.

The most practical chapters are Chapters 1 through 5 and 7. If you're interested in gentle yoga pre-surgery, see Chapter 6. Post-surgery, be sure to consult your team regarding any yoga program or exercises. The "seated meditation", "body scan", and "walking meditation" are simple and useful techniques and can be used by novices. Mindfulness is a very useful life skill, and I wish I had learned about it a long time ago.

BarredOwl

Hopeful82014

The following is a link to free, generally brief, mindfulness exercises offered through UCLA. They might be helpful either while waiting to obtain a copy of the book and/or in conjunction with it.

I was directed to this by my 'survivorship nurse' and truly could have benefited from it much earlier in my treatment process.

Some hospitals have adaptive yoga classes for cancer patients and many are very low cost or entirely free. This has been very helpful to me as it incorporates mindfulness with stress reduction, body acceptance and release of physical tension.

http://marc.ucla.edu/body.cfm?id=22