Overtreatment?

Miscraw

I can't help but think I am totally being overtreated the more I read posts on this board. I had large area of DCIS with mutlti-focal micro-invasion. They didn't have a number of micro-invasions because there were so many. I am also ER+ and HER2+ and 39 years old. I chose to have BMX. The DCIS was very widespread so I definitely needed the right breast removed & opted to just do both. Originally I was only told surgery would be needed. Then when pathology came back, I was told Tamoxifen. THEN....they decided that Taxol & Herceptin were a good idea. I am a grey area is what I kept being told, but with my young age they wanted to be sure there was no recurrence. Now they are even discussing radiation because of my close margins! I don't know what to do!

However, I don't think I've seen anyone on this board with DCIS & microinvasion going through chemo. I feel in my heart that I don't need it, but don't want to be a chemo dropout. Has anyone seen or heard of a case like mine?

Beesie

Miscraw, the issue in your case is the multiple micro-invasions.  That's an uncommon condition - most of us have one or at most two microinvasions.

I think there are a few others here who've had a similar diagnosis and treatment to yours. You will find them here: 

calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

BLinthedesert

OH Miscraw, I am so sorry to hear of your diagnosis, and the weird in-between place you find yourself in.  The taxol treatment just sucks. 

It is so scarey, but try to remember that you are trying to prevent recurrence, and your prognosis is still likely very good.

Beatmon

Miscraw: I only had 2 very small areas of invasion...supposed cured 95% by BM despite high her2n+. Not recommended for any further tx. Now 2 years later, a very unpleasant surprise of multiple lung cancers found accidentally by a ct scan for an implant problem.

I didn't share this to try to scare you. Just weigh heavily all of your options. I didn't meet current guidelines for chemo.

luludoc

Miscraw

My English is my second language sorry about my writing mistake….  (and I dont know what is BMX abréviation) 

At the age of 43

breast cancer only 2mm, invasive, grade 3, HR+, HP+, HER2+,  node -,

This is stage 1a = for my doc: NO CHEMO, only surgery and radiotherapy

 N.B. some doc give treatment for that kind of cancer at that time (2009).  It is rare that doc find breast cancer so small and her2+, so they dont have guideline for breast cancer smaller than 5mm (stage 1a). Before 2009 they give chemo for stage 1c and more. In 2009 they have proof  to give chemo to  stage =1b or >,....   

I wanted so much chemo in 2009 because it was very aggressive (grade 3 and her2+). I bring her many articles about it…. But my doc didn't want. 

Less than 3 years later.... I was a Christmas tree on PET scan with a 4.5 cm mass on lung (biopsie show the same breast cancer)

So that mean: the bad cells were already spread in my body 3 years ago, this is a progression, not a recurance and chemo at that time would have kill them....  I know that we don't  know the future but I think that my chance would have been better if I had chemo in 2009...

Remember… only cancer of 2mm!  and it was already spread.  Now, I'm having chemo all of my life... I'm stage 4.   Hoping you take the best decision for you...  and don't forget, I'm the no lucky one with that type of cancer, probably many women have good result with no chemo and  they aren't on the web site because they take back their normal life... In 2009, I didn't want to take the chanceLuluhttp://www.ncbi.nlm.nih.gov/pubmed/19884543    2009http://www.ncbi.nlm.nih.gov/pubmed/24888816    2014

 

 

Redhead01

luludco...thank you for posting your experience.  I was told today that my oncotype test recommends I get chemo.  Having a small tumor, and clean nodes, was pretty much on the path for just rads and 5 yrs of meds.  Hearing that you had cancers in you that could have been killed has made me re-think my wanting to just say NO to chemo.   Your English is great, by the way   I think most of us feel like its over-kill because we are overwhelmed.   None of us gets out of here alive...but cancer is not the way I wish to go.  Blessings on your journey. Hugs

meshel

I'm weighing weather to have radiation therapy or not, I had a small amount of invasive with extensive DCIS, I had a lumpectomy and 2 re-excisions. the invasive had clear margins at 1st surgery and no evidence in the second 2 surgeries which successfully obtained clear margins.

Through altering my lifestyle and major diet changes I have 2 dr's say Radiation is over treatment and only reduces my risks of recurrence 13% . my main oncologist says I'm playing russian ruolette if I do not do radiation.

I had augmented breast from the beginning and have managed to keep them, the radiation will likely cause cause them to encapsulate resulting in removal .. anybody know the likeliness of this as well ?

I feel selfish to be worried about cosmetics but I'm 46 in a new relationship with an amazing man and would like to keep the breast for his benefit

kikibsmith

Hi,

I wanted to let you know that I had DCIS w/ micro-invasions. I opted for surgery (BMX w/ nodes removed) with the understanding that it may be the only treatment required. However, my final pathology revealed clear margins and nodes, ER/PR - and HER2 3+ positive. On the L breast the "spray" of micro-invasions stretched from the nipple to almost the chest wall. I was ineligible for any oral therapy and I just began my chemo therapy regime yesterday. For me, today it feels like the right decision. I feel good today.

I am also in the middle of reconstruction although, I am slowing that down during chemo.

I send you health and healing.

kikibsmith

Hi,

I wanted to let you know that I had DCIS w/ micro-invasions. I opted for surgery (BMX w/ nodes removed) with the understanding that it may be the only treatment required. However, my final pathology revealed clear margins and nodes, ER/PR - and HER2 3+ positive. On the L breast the "spray" of micro-invasions stretched from the nipple to almost the chest wall. I was ineligible for any oral therapy and I just began my chemo therapy regime yesterday. For me, today it feels like the right decision. I feel good today.

I am also in the middle of reconstruction although, I am slowing that down during chemo.

I send you health and healing.

norchinu

I have recently been diagnosed with DCIS with one area of microinvasion in my left breast. The lesion was HER2 plus 3. . I am BRACA 1 and 2 negative and the lesion is estrogen negative so I am not a candidate for tamoxifin. I have had 2 lumpectomies and do not yet have clean margins. My surgeon is recommending a 3rd but my instincts tell me that with the mincroinvasion I should just go through with a mastectomy.

I am also 59 (today is my birthday) and the mastectomy would avoid radiation over my heart which I would like to do. My surgeon tells me that I should try again for the 50% success rate of a repeat mastectomy but I am unsure.

If anyone has any thoughts I would appreciate them.

Thanks and my prayers are with all of you.