Newly Diagnosed ER-, PR-, HER+

Hello ladies-

I need your help. My name is Liz and I am new to this forum.  I need help in deciding my treatment options. I am interested to see how others in my situation were treated. I was recently diagnosed with DCIS high grade, with comedo necrosis, ER-, Pr-, Her2Neu+ with one focus of microinvsion that was less than 1mm in greatest dimension. I had some ugly cells. I have been told that about 80% of DCIS is Her2Neu+ but it has no meaning on the DCIS. I ended up with a lumpectomy and re-excision. I have nice wide margins. One sentinel node taken was clear. My surgeon used the dye and isotonic solution to identify the node. She has a reputation of being a very skilled surgeon. I have had a dye contrast bone scan and a dye contrast CT scan of head, chest, pelvis, and ab all came back normal. Now every doctor I have spoke with says that I "fall into a gray zone" as far a treatment goes. Most of my doctors are confused as to why the Her2Neu test was even done. 4 oncologists just want to do radiation because my microinvasion was so "tiny" that it could have even been missed by a different pathologist and I would have been lumped in the DCIS category. However, an oncologist I met with yesterday is not sure how to approach treatment.  She is considering chemo and posssibly Herceptin but she is concerned that the risks with this aggressive treament may outweight the benefits and not sure if necessary to do all this. She is planning on contacting some large cancer insitutes for guidance. What complicates matters is that I'm only 38 years old with no history of breast cancer in my family. Has anyone in this group been in a similar situation with DCIS and such a tiny microinvasion? Any feedback would be much appreciated. Thank you.

Liz

I'm very very sorry about your mom.  But please don't make me or anyone who has DCIS with micoinvasion feel like we're doomed. We're here to support each other not make eachother upset because we are upset.  Right now you just made me very upset. I realize that you are upset about your mom and life is just not fair.   I am 38 have 3 young children, one of which is a 10month old baby.

The problem with DCIS is that 80% of the time it is Her2Neu+. Some doctors say it's actually a higher percentage (such as Dr. Susan Love and John Hopkins, etc ). There are many many cases of DCIS with microinvasion and many DCIS with microinvasion that are missed and lumped in with just plain DCIS. When embarking on Chemo and herceptin, risks need to be considered as well. Unfortunately they are not a sure fix.  I wish they were. You can actually develop cancer from chemo as one of the risks. The long term affects are not well known. Lumping a 5mm invasion with my less than 1mm is not the same thing. With cancer each mm counts. I have been told that numerous times and have read that numerous times. Your mother had a 5mm of microinvasion that is a 1/2 centimer. That's a large invasion which usually calls for agressive treatment. I have a "focus of less than 1mm in greatest dimension".  I hope everything works out with your mom and God Bless

Hi Kirsty,

sounds like you are getting all the right things done and soon your chemo will begin.

My advice is to remain hopeful, my worst moments were when I felt hopeless.

My oncologist told me on my first visit that my case was not hopeless and MANY people survive many years.

You can start or you may find a thread in the chemo section for peopl starting chemo in April-08. I had the most wonderful group to share my experience with and we still support each other today. There is nothing quite like going through something together.

Know that the chemo will be tough but most SE are manageble and really before you know it that part will be done.

Try to find something positive in every day that will keep a smile on your face. Hug your family.

Fists up!

Hey mary jo!

Yep, God Bles us all.

Good luck with your recon; I had mine when I had my left  breast prophylactively removed (2006), so I got 2 new boobbies.I have never looked back.

Good luck,

2005 was not  a good year! The best years are ahead!

Hi , I am 3 years out and doing great.  I am not sure why you're on Tamoxifen if you are er/pr negative?! It's indicated for hormone pos ladies.

anyway,

I had my other breast removed after my treatment as i had very dense breasts and it was lumpy. i had Bilateral recon and am happy with the results. i did not test for BRCA as my sister tested neg, and my familiy hx profile does not fit with BRCA pos. Chemo put me in Chemopause, and I am fine with that too. ( I was 50 and had reg menses when dxed)

Take it day by day, you will get through this even though this is the hardest time. Chemo  side effects suck, but Heceptin is a kick a** drug for us HER 2 pos ladies.

Take Care!

Hi Texas

If you are needing a scan then PET/CT is the way to go. You get both together and that is MUCH better than doing the scans separately.

In the past bone scans were done on everyone but now they are usually done when one has bone pain. PET isn't as good at finding early bone mets.

MUGA scans are done for heart function and are done before chemo and then during the course of treatment if needed

Hope this helps a bit. I would write my questions on those little yellow sticky pads. My purse was full of them and they would get all over the place when I would rummage around looking for my wallet.

Take one day at a time and before you know it this will be in the past



Henny