Still NED!!!

So happy for you this is wonderful news.NED just love it!!!Have a great day you deserve it!

Hugs

Denise

 

Dawn, please share more of your story as you find out your stage, grade, tumor size, lymph involvement, etc.  We are here to offer support and hope for a long, long, long, long cancer free life.

 

Love and God Bless,

Lillie

I think that your instinct to have a bilateral mastectomy is very reasonable.  I had a lumpectomy, rads and chemo after my first occurrence, but My case was a little unusual.  Here is the story.

Five years ago, my initial diagnosis based on mammogram, biopsy, CT scan and MRI was DCIS (ductal carcinoma in situ), triple negative, grade 3.  DCIS is stage 0, and is really a precancerous situation in which there are cancer cells growing but they have not yet organized into an invasive tumor.  It was first detected by the visualization of microcalcifications (which look like little pixels of light) on the mammogram.  THe tumor was not visible on mammogram or CT, and in the MRI it looked like a 1.2cm area of DCIS, rather than a tumor.  All doctors advised that a lumpectomy followed by radiation was the standard treatment for DCIS and a mastectomy was considered overkill, given I had no family history of breast cancer.

However, the pathology of the lumpectomy contained a surprise - I actually had a 1.2cm tumor.  That changed everything.  I think it's possible that the DCIS turned into a tumor in the 3 weeks that I waited in between the biopsy and surgery.  I was offered a much earlier surgery date, but I didn't feel ready and wasn't sufficiently knowledgable about TNBC to realize how potentially serious the situation was, so I was not in a terrible hurry for the lumpectomy.  It's also possible that the CT and MRI just couldn't show the tumor because my breasts were pretty dense (I was 44).

My surgeon said that we needed to do another surgery to dissect some lymph nodes to look for any metastases.  ANd since chemo was now a certainty, she also placed a port-a-cath.  But since the pathology showed the margins around the tumor that had been removed were clear, she didn't think any more surgery on the breast was needed, and it didn't occur to me to reconsider a mastectomy, especially since the lymph nodes turned out to be clear.  None of my medical team recommended it.  I proceeded with a very aggressive adjuvent chemo regimen (FEC x 3 followed by Taxotere x 3) and then had 37 radiation treatments.  

THen, 11 months after radiation was completed, I found a hard lump in the same breast in a totally different location.  THis turned out to be a 2.5cm tumor, again TNBC.  I did not hesitate then to have  bilateral mastectomy.   I also requested that the first layer of LN on the tumor side be removed during the surgery regardless, as a precaution.We don't know for sure whether this was a recurrence of the original TNBC or a "second primary" tumor.  But one thing is for sure - I wouldn't have had it if I'd had a mastectomy in the first place.  I think that my medical team and I all made good decisions based on the information we had, but in retrospect I wish I had had a mastectomy after that lumpectomy revealed the tumor.  After the BMX, the pathology showed that the axillary lymph nodes were still clear.   So my stage at that time was 2a.  I got multiple opinions from experts on which chemo to do, and i had a standard CMF regimen.  We had every reason to believe that I was cured at that point.  But then 11 months later I found a hard lump near my collar bone, which was LN mets.  YOu can see the summary of the rest of my story in the signature line.

So, I am now a big supporter of bilateral mastectomy for even Stage 1 TNBC, but it's a very difficult thing to do and there is no way to know whether it's really necessary.   You just have to decide if keeping your breasts is worth the risk of a recurrence, which isn't that high for Stage 1 TNBC if you are BRCA negative.  I think it's about 20% but you should ask your doctor.

ANd the good news in this story is of course that I am now disease free!  I have managed to live a full joyful life throughout most of the last 5 years and my life is richer now than before the cancer.  I may have another recurrence, of course, and if so we will just start treatment again and carry on.

Hugs,

Beth