Help I have been diagnosed with IDC after a mastectomy

No experience here with a recurrence, but I wanted to stop by and give my support. I know someone will be by soon who has had a similar experience. Good luck and keep us posted.

Hi Okimaw,

Yes, this happened to me. I had IDC on the left side, opted to have a double mastectomy because I found out I was BRCA 2 pos, then had chemo, and was on Tamoxifen for 6.5 years. 8.5 years after the first cancer dx, I was dxed again with IDC on the SAME side. I had surgery to remove it, and recently completed 30 rad treatments. I'm 44 and have been post-menopausal since my prophylactic hysterectomy and oophorectomy in 2010. I am currently on an AI.

I would guess that you will have to get radiation therapy and go on anti-hormonal treatment as well.

It's unusual to have a recurrence after a mastectomy, so they usually want to treat it aggressively. Your first dx was DCIS and mine was IDC (along with a little DCIS), so they may proceed differently with you, but I doubt it. The other thing you should ask about is whether you need staging scans (i.e. bone scan, CT, etc.). I never had those until my recurrence.

Of interest is the fact that there is some debate as to whether a re-diagnosis of breast cancer is a true recurrence or a new primary. The data says the average recurrence time is 4.7 years, so since you are 6 years out, this may be considered a new primary. The reason this matters is because you could have the sample sent out for Oncotype testing to see if chemo would be useful in your case.

Good luck, and keep us posted!

Hi Wallan,

The second IDC tumor showed up at around 5:00 on the outer left quadrant of my left breast. The first IDC tumor was in the same region, but at 2:00. The first time I had multifocal bc as well, which is why I had a mastectomy. The lumpectomy I had at first originally bisected a tumor that hadn't shown up on imaging. So rather than going back for another lumpectomy, I chose a mastectomy. Then 8.5 years later I had this second cancer.

I had always read that recurrences tend to show up in mastectomy scars, but this second one didn't. It was just hanging out in between the skin and chest wall, according to my MO. It was a palpable mass, which is why I found it.

Your signature says you had rads already, so is that why they're not recommending it this time?

I can understand your concern, given what you've been through!

From what I know, you need to think of the cancer in your left breast as its own thing. In other words, your doctors aren't necessarily linking it to your prior cancer, so they're treating it like a new primary and using a treatment protocol that they would use if you've never had cancer before. So if a woman presents with 5 tiny tumors, no nodes, no LVI, and good margins, the standard of care is mastectomy without radiation, and chemo if the Oncotype score indicates it would be helpful.

I've gone through the same uncertainty. It's hard to view your new cancer as an independent event, but I believe that's how the docs are viewing mine (and yours). The only difference is that I've had a bunch of scans and will continue to have them over the next several years. This wasn't the case the first time I was diagnosed. I didn't have bone scans and CTs, just chest X-rays and blood work. So in that sense, my monitoring is different this time around, which I don't think I would have needed if I hadn't recurred. Also, I had rads this time even though there was no node involvement because A) the cancer came back in the same breast, and I had LVI. Also, I am BRCA pos, and apparently BRCA mutated cells are very easy to kill with rads.

Who knows? Sometimes I feel like we're all being played like a game of Russian Roulette.

misslil, I am very sorry about your situation. Mine is very similar - IDC 4 years post-mastectomy for DCIS. It appeared on the chest wall, above the scar line. For DCIS, I only had the dmx - no hormonal or radiation therapy. I've had lumpectomy 10 days ago, and they found one spot of DCIS on margins. Recommend to re-excize for clear margins. I am still thinking.

I've refused rads, and haven't yet seen an MO - who may want to put me on chemo. Which I'll also refuse. I decided to go alternative route. Surgery is the only thing I am open to. My firm belief is that our bodies need all our love, care and support to strengthen the immune system so it heals on cellular level from within, and not turning against it annihilating our physiology further damaging it with the poison and radiation promoting secondary cancers.This is my strategy, and I am willing to take associated risks, if I happen to be wrong in my belief system that loving and nurturing my body would have a greater benefit for healing.

Good luck in your journey. Wishing you a speedy healing, and absolute cure.