Grade 3 recurrence after 18 years....

Sighhhhhhh. Do so wish that I hadn't had to look up any resources for DCIS. I did think that I was SO done with it. Fast (very fast) forward almost 18 years and here I am again. I was first diagnosed with DCIS, stage 2 at 44 years old (1999). My surgeon called with the results of the biopsy sounding like she was so sorry to deliver such overwhelming bad news (which, it was bad news, but really??). Thankfully there was the internet, so I could get a realistic view of what I was dealing with. Before that, however, I was trying to figure out ways to tell my husband how he needed to take care of our daughters...

My surgeon recommended a mastectomy, which I had decided (after much researching) was a bit of overkill. So, I had a lumpectomy (left breast, > 3 cm DCIS). The margins were not clear, so 10 days later, I went back, and had another surgery. After clear margins, I had 6 weeks of radiation and took five years of tamoxifen. I never had any adverse effect from the rads or the tamoxifen. I was told that my periods would most likely stop while I was on it, but that never happened. I had another 11 years of menstruating. I saw an oncologist for those five years while I was on tamoxifen, and almost always felt like he looked at me like "why are you here??" Was that just me? Maybe....

I have been having yearly mammo's since then. My last mammogram, July 18, 2017: I was called and asked to come back in within the next few days. The radiologist said they had found some new calcification's at the 12 o'clock spot on my left breast (what I had removed was from the 6 o'clock area), so, totally new area. She was already recommending surgery, reconstruction and maybe I should consider having my right breast removed also. Okay. So, now I am 61. My world does not come crashing down around me. I mostly think, well F. Just F. Actually, sent that exact text message to my husband, but with more than just an F.

After the recommended biopsy I was told there was good news and bad news. Good news being it's non life threatening, bad news, it's DCIS again and grade 3. Pathology: DCIS solid, cribriform and comedo type, high grade nuclei (grade 3 of 3) 0.35 cm in the largest focus. Receptor results: ER 97%, strongly positive Allred score 8 of 8. PR score: 4% weak; Allred score 3 of 8. The doom and gloom from 18 years ago was not present, thankfully!! Back when I was younger, it appears they didn't record the receptor results. Either that, or it just wasn't included on the pathology report.

I have since consulted with a breast surgeon who has recommended a mastectomy with reconstruction on the left breast and having a reduction on the right. I will see a plastic surgeon in a few weeks, and see what he recommends, and have been given a reference for an oncologist (from my breast surgeon).

I have decided not to rush in to anything and am giving myself some time to think things out. The surgery is scheduled for the end of October, so I will ponder on things from now until then. Am I doing the right thing? Do I need to remove my left breast, should I have reconstruction (and what type), what about my right breast? Should I even be thinking about it, shouldn't I just do it?? I am so thankful that I am, at least, able to put some time into making these decisions. Some women just don't have these options.

Sorry for the lengthy (first time) post. Sometimes one just needs to vent! Thanks for listening....

Do you qualify for genetic testing ( so insurance will pay)? I do know, since you are over 50, you must have 2 relatives who have been diagnosed with breast cancer in the past. Even if insurance will not cover, it might be a good idea to be tested. That would be a good indicator for your decision of lumpectomy vs mastectomy, maybe even bilateral mastectomy. If reconstruction is necessary, I highly recommend the DIEP! My sister, 10 years younger, was just diagnosed, stage 0, they think, but some suspicious area below where biopsied. She has opted, even though my genetic testing showed no genetic or hereditary, environmental only cause, for a bilateral mastectomy with DIEP reconstruction at the same time. Thirteen years ago, I was diagnosed Stage IIIB, have been and still am on Femara, and blessed to still be alive and working. I had full rads and chemo. Waited about 3 years and opted for the DIEP. Never looked back. My sister is going to my same reconstruction doctor, and things have only improved over the years (not that mine needed improvement). Doing this, she will be considered "cured", of course only if nodes and margins are clear. This will also allow her not to have radiation or take meds. If she only removed the 1 breast, she would have to take the meds for 5 years. Lumpectomy she would have to do radiation and meds. Hope this helps!!

Thank you MTwoman for your kind hugs, and for the informative post.

cmlorino1, I do not have any relatives that have been diagnosed with bc. I guess, thankfully, I'm the only one.... I asked my surgeon about the DIEP, she said they work well (with some issues that may or may not come up....). However, she doesn't do them (because she is a small office and doesn't have the manpower it takes for that type of operation), so I guess I'll have to see what my plastic surgeon says when I see him. It's the same breast, and since I've already had radiation, I can't do it again (not that I would take that option, I never had any side effects, but radiating myself once is more than enough!!)

Annette47, I always said the same thing too. Said to myself, just one "iffy" mammo and I'll go the mastectomy route. Now that I'm (unfortunately) there, it's not quite as easy as I thought. I'll have some time to think about it after my appointment with the plastic surgeon, so perhaps I'll know more then!

Thanks all, for your words!

CBP - your experience is similar to mine. DCIS Grade 3 in my early 40s, two lumpectomies, radiation, tamoxifen. At age 61, more calcifications/DCIS Grade 3 identified with a needle biopsy. As Annette47 says, they can't do radiation twice, and my surgeon was adamant that after recurrence "there is no research saying it is safe to just have a lumpectomy." Being stubborn and wanting to fully understand the risks, I didn't immediately agree. I decided to have another lumpectomy first, the idea being that if the margins were clean I would feel comfortable waiting until I could fit a unilateral mastectomy with DIEP flap reconstruction into my work schedule. The lumpectomy found < 1 cm with inadequate margins, but when I finally had the mastectomy six months later, there was a very large (5 cm) area of DCIS. Just goes to show that pathology can miss DCIS if it is not all in one contiguous area.

Unless I had a genetic mutation that put me at high risk for cancer in the other breast, I would never select a bilateral mastectomy. From everything I've read in these boards, recovery is much easier with unilateral MX. If you're having an autologous tissue procedure such as DIEP, unilateral MX requires less surgery on the donor site. If you're having implants, you'll have one natural-feeling breast instead of none.

It took me a few tries to find an oncologist that would follow me after MX. One just told me to come back if my bones started to hurt! I found someone who takes my situation seriously, follows up with any new genetic testing that might be available, refers me for an MRI when needed, checks me out annually, and is there if I have a question.

CBP, if you want to avoid all the complications and surgeries with reconstruction, there is a healthy thriving community of us Flat and Fabulous gals. In fact, one of us was interviewed in Oprah Magazine this month (on newsstands now) and it goes into all the risks with reconstruction and why Flat is starting to be 'in'. Flat and Fabulous on Facebook welcomes anyone considering their options and you can see a ton of body shapes rocking living flat. To me, there are tons of advantages, I did initially go the recon route - but soon realized it was a total mistake and got them removed. Come join us on F&F if you are curious about this option.

I had to post after reading all of the interesting responses to initial post. I sure wish I could go back to my first surgery when my BS said " I would do a bilateral if it were me, so I wouldn't be back here again" wow, at the time I brushed it off after reading the chances of developing a new primary in the contra lateral breast were indeed small. I also really wanted to keep one natural breast to feel a semblance of normalcy

Cut to 4 and 1/2 years later, same burning and bee sting feeling in remaining breast that I had before, but no discernible lump this time, only a slight thickening in inframammery fold. Sure enough, a new primary that is very close to triple negative with a much more aggressive grade 3 type ! Sigh, I sure wish I had listened to the breast surgeon, getting a second breast cancer diagnosis and subsequent mastectomy was like getting thrown down 5 flights of stairs! This after I really thought I was out of the woods, so to speak.

I wanted to share this not to frighten anyone on here, but just to let others know that the risk is very real for some of us to develop breast cancer in our remaining breast.

CBP, to be honest with you nobody but this one breast surgeon brought it up! I had many mammograms that said no signs of breast cancer, 1 when I had a palpable tumor. I did initially have an immediate reconstruction with Alloderm and implant with my first mastectomy, it was a very bad experience for me, swelling, necrosis, pain, so, I abandoned the whole thing after 2 attempts to salvage expander ( I had implant type as I had not enough tissue for other surgeries).

It is a very personal and very tough decision, particularly when one is so distressed over a cancer diagnosis. I am very happy with my decision now to not pursue reconstruction, and even though of course I miss my natural breasts, I have grown used to being flat. I wear lightweight prosthetics sometimes, other times I go flat for comfort. Just to share with you.....I personally found the totally numb breast mound to be distressing.... it not only was unnatural from my perspective, but, it served as a constant reminder of how much I had lost.

Best of luck in whatever decision you make, you have lots of support on this site

So sorry to hear you are dealing with decision making again.

I found this article about DCIS. I don't know if it will be more helpful or more confusing, but it sounds like you have plenty of time to make your decision. I had invasive cancer right out of the gate so was forced to make dramatic decisions.

Best to you and hope your journey will be easy.

http://www.npr.org/sections/health-shots/2013/08/0...

A, somewhat late, update.

Saw my breast surgeon on October 10. At this point, she is still under the impression that we're going with a left breast mx. Hmmm, I mention that the oncologist and I have discussed lumpectomy and he was good with that and would discuss this with her. Okay, so now in her office, and she says, "okay".

Alrighty then. We go from mastectomy, overnight in the hospital, drains, pre-op, etc, etc, to: show up early for wire placement, surgery that will be an hour or so, then head on home. Ask her if she is comfortable with this decision, and she says that if she was not, she would have discouraged this decision.

November 6: surgery goes well, margins are clear. I am in and out of the hospital before noon. My incision is no bigger than 2 inches, and my breast is intact. Phew.

Am I done with all of this? Have I just kicked a potential can down the road? Maybe. I'll hope for maybe not. TBD.

Currently taking Anastrozole, with no side effects at this point. Fingers are crossed!