Recurrence after bilat mastectomy?

Psalms, I probably didn't answer as I don't have implants or foobs. I agree with Bren, though, a second opinion or a "wait and watch". Any redness would be of concern for infection, so keep a good eye on it. Hugs to you, sweetie!

Hi, Psalms, after about a year I started having itching and some shooting pains here and there. I was told that some of the nerves can start to reconnect and cause this, like phantom pains people get after a leg or other amputation. I do not have nipples, but they always itched. Hang in there it did get better for me. Good luck, Stephanie

NO!  Hindsfeet, what happened in your situation is terrible, but the way that you are presenting it could be really scary for some women, and it just logically isn't how things most likely developed, not based on how cancer generally develops and spreads.

In your case the cancer cells that became your HER2+ recurrence had been in your breast for around 3 years from the time of your first recurrence, when you had narrow margins with the DCIS (and didn't have rads) until the time when your HER2+ invasive recurrence was discovered.  There obviously was more cancer beyond those narrow margins, and that's what ultimately became the invasive recurrence.  Those DCIS cells left behind after the first recurrence might have become invasive at any time during that 3 year period, and in fact some of those cancer cells might have already been invasive, beyond that narrow margin, even at the time of your first recurrence.  

During all those years, the cancer had the opportunity to spread.  That is almost certainly when the mets developed.  Those invasive cells could have started to spread at any time over those years - there is no absolutely no reason to believe that it was the biopsy that caused seeding (even with the blood clot) and that in turn caused the cancer spread, in just the couple of months between your biopsy and your surgery.  The fact that you were starting to feel the mets in your sternum within 6 months of your reconstruction surgery is further evidence of this - if the spread had started only at the time of your biopsy, it likely would not have been physically evident that soon.   

Thinking back to your HER2+ recurrence, the fact is that your biopsy removed close to 2cm of HER2+ invasive cancer, and then your surgery removed another 1.8cm of HER2+ invasive cancer.  For there to be that much cancer, you must have had the HER2+ invasive cancer growing in your breast for a period of years - and that's when the spread beyond your breast would have started. 

I think it's important that no one be scared away from having a needle biopsy, or an excisional biopsy, or a lumpectomy, or be frightened if they have to wait a period of time between their diagnosis and their surgery.  Of course it's impossible to know exactly what happened in any case or when a cancer started to spread, but the likelihood that seeding from a biopsy will cause mets, when the primary cancerous lesion in the breast didn't, is slim to none.  What we do know is that every year, hundreds of thousands of women have biopsies and excisional biopsies and lumpectomies without clear margins, cutting into the tumor but not removing all the cancer cells (until a subsequent surgery at a later date), and yet they never go on to develop mets. 

I was curious when Beesie responded to Hindsfeet so I searched the net for info I haven't looked at since I lost both by breasts almost 6 years ago. This is what I found on NCBI: US National Library of Medicine: BJR An International Journal of Radiology (the article is dated 2011):

Diaz et al [3] examined the post-excision specimens of 352 patients who had already undergone large core needle biopsy. Of these, 76 cases showed tumour displacement of 1 or 2 clusters of cells and 38 showed multiple displaced tumour fragments. Tumour displacement was seen in 37% of biopsies taken with an automated gun and 23% of specimens obtained with a vacuum-assisted needle. Tumour displacement was seen less frequently as the interval between biopsy and surgical excision lengthened. For example, tumour cell seeding was seen in 42% of patients when the interval between biopsy and excision was less than 15 days, but this was only seen in 15% of tumours excised more than 28 days after biopsy. This reduced the incidence of seeding down the needle track with time and was significant (p<0.005). This suggests that seeded cells do not survive displacement. Overall, tumour cell displacement occurred in approximately one-third of patients who had undergone a large core needle biopsy. Although numbers are limited, vacuum-assisted biopsy devices appear to be less frequently associated with cell displacement than conventional automated biopsy devices.

....and, let's not forget, according to some leading biostatisticians who are forging the discussion of over treatment, there are some cancers that spontaneous regress and disappear even before they can be imaged or become symptomatic.  Which adds to the controversy of early detection saving lives.  The sad point is that at the present moment, aggressive cancers are at first, difficult to identify with precision with the present means that we have.  So, I think Beesie is correct.  One can't use a calendar and say with certainty, when a cancer developed much less than it could be identified as having metastized.  However, the "how" part of the equation, that is identifying those cancer cells that are aggressive, we are getting much better at understanding.  And I think common sense tells us if a biopsy is THAT dangerous, then it would NOT be a part of the standard of care.

Barbe said: "I read years ago that breast cancer doubles in size every 180 days."  I wanted to add my voice to this because this is a subject that interests me a lot.

There are quite a few publications on the doubling times of breast cancer tumors and it's estimated that a Grade 1 tumor that is ER+/PR+/HER2- and in a post-menopausal patient (so, likely a Luminal A cancer) has a doubling time of approximately 180 days and sometimes quite a bit higher than that). I read that the average DT for a Grade 2 cancer is said to be in the range of 120 days, and average for a Grade 3 is estimated at about 60 days. However, there are LOTS of variations in there based on hormone receptor percentages, abundance of HER2, patient's age, genetic factors, KI-67 score, etc. But, it's the more "traditional" breast cancer patient (the post-menopausal woman with a Luminal A tumor) that is referenced when we hear the typical "breast cancer takes 8-10 years to develop before it's usually big enough to notice." Those stats are a catch-all and don't take into account the more aggressive cancers. Being a BRCA1 mutation carrier who was diagnosed with triple negative that was also basal-like at age 34, I wondered how long this thing had been there. I knew not long because I could see it growing in the 5 weeks between discovering it and the excisional biopsy. I was reassured by my team at the NCI CCC where I had treatment that it was less than a year old because of my particular circumstance. Interestingly, I've since learned that for BRCA mutation carriers, the mean doubling time was 45 days with the average for mutation carriers diagnosed under age 40 to be 28 days. I know that I'm in the minority here because of my age, my BRCA status, etc; I'm the exception, not the rule. I just wanted to add this to the conversation for those who may be interested or stumble upon it years down the road.

Hi, Barbe. You're absolutely right. BRCA1 and 2 mutations are very rare. Myriad Genetics told me that they estimate that only half of one percent (0.5%) of the American population has a BRCA1 mutation and that about a quarter of one percent (0.25%) has a BRCA2 mutation. So, yes, it's very small odds. I put that info about doubling time for this small population in there because I wanted to highlight the difference, but I do want to reiterate your point that most breast cancers are of the slower-growing variety and have estimated doubling times of anywhere in the 120 - 360 day range. 

You're welcome, MinusTwo. I would venture a guess that HER2+ breast cancer is probably very comparable to Triple Negative. The two are often compared with regard to their aggressive natures. I don't remember the source, but I seem to recall that the average for HER2+ was in the 45-120 day range. Individuals can of course fall anywhere on the spectrum.

I just came upon this message board. I saw that it was started so many years ago. How is everyone doing now?

I was diagnosed in 2010 with triple negative breast cancer in my right breast. I am  BECA1 positive and my mother passed away from cancer at age 45. The decision to have a double Mastectomy was easy. I also had 16 rounds (combined) of Adriamycin and Cytoxan as well as Taxol. 

Fast forward for years, and I've had a baby and I'm doing great. I went for my six month check up last week and my oncologist found a lump in the other breast. We did an ultrasound and a mammogram and it is suspicious of cancer. I had previously had fat necrosis in the same side as where the cancer was. They were hoping it is that, but they just don't know.

I went for an ultrasound and a mammogram and the scans are suspicious. I had a biopsy yesterday and hopefully the results will be in soon. I asked the doctor to be straight up with me and a few different one's told me they honestly did not know what it is. There is a little bit of an oily cyst in there, part fat necrosis, and part something hard that looks vascular. The vascular part scares me because I know that is a term related to cancer.

tomorrow or Tues. So odd. I just can't find anything online about new primary breast cancer in the other breast after a double mastectomy. It's like the lowest odds. I didn't even have lymph nodes infected. 

FYI got my results- positive for cancer

jenn - CRAP! Oh my dear - I am so sorry. 

Jennj - so sorry for your diagnosis.  I had no breasts after BMX, but had a recurrence in the lymph nodes under the collar bone.  Just finishing up 18months of chemo, more surgery, more chemo & rads.  You haven't filled in your profile yet.  Are you HER2+ in addition to BRCA?  What about ER/PR status?

We'll be here for you as you navigate this new diagnosis.

Jenn, so sorry you have to go through this again. It is very rare, I just finished rads for my 3rd BC, every doc I have seen in the last 3 months, commented this does not happen after mastectomy, well it happened to you and to me, and to others. I was so shocked and devastated, at first, did not think I could get through it again, but I did and so will you. Hang in there, we will be here for you. Stephanie

Jennjdance ~ So sorry about your recurrence.   Have you heard of the cold caps?  To save your hair during chemo?