Process of making treatment decision need help!

I was diagnosed in November of last year and chose the mastectomy. I am 52. You can see below that my diagnosis is similar to yours, just grade 2 DCIS instead of grade 1. I was offered the same choice as you, rads + 5 years tamox, possible hysterectomy later. I did the gene testing and had no known markers.

I had a bilateral mastectomy, no reconstruction.

I just didn't want to mess with worrying about more mammograms, more biopsies, the stress of "surveillance" etc. anymore, and decided I'd rather deal with surgical side effects instead of rads/meds side effects.

It was not a walk in the park, but I am pleased with my results and happy with my choice. This is just a hard decision, no matter what.

Note, if you are in the U.S., you can demand that both sides be done, for symmetry. Insurance is required to cover this under the law.

Sending you support no matter what choice you make.

jinmo

I chose one-step BMX/reconstruction with no regrets. I do think that BMX is not the norm for DCIS; it seems like more women with DCIS choose the lumpectomy/radiation/hormone therapy/surveillance combo than choose "one and done" BMX.

But...I am TERRIFIED at the direction medical surveillance is heading in. The lump/surveillance path is 100% dependent on how good your follow up surveillance will be. I read more and more about how the medical and governmental entities are trying to save $ and issue findings that "less is more" in so many areas of medicine.

With the lump/surveillance route, there could come that one day that your cells decide to create a recurrence. 50% of the time that recurrence will be an invasive cancer. I think right now the mammos are done every 6 months for 5 years after the lumpectomy. That may or may not satisfy most patients re: catching something really early, but what if medicine/government decides at some point that every year is really good enough? Every other year? Etc.

Medical standards are a moving target. Laws change. Insurance obligations change. The statute requiring that all of this be covered could change. I just felt more at ease knowing that I did everything possible at the earliest possible moment. With DCIS, I could choose immediate over the muscle reconstruction because the lesion was so early and my skin had never been radiated. I would not have the same cosmetic choices if I recurred, and possibly not even the same insurance coverage for the procedure (which some future statute/law could deem purely cosmetic).

Yes I'm a worry wart. Most DCIS is fully cured regardless of the path you choose.

I am in the process of recovering from my bi-lateral MX June 1st with tissue expanders in place and just got scheduled for my exchange to implants August 1st. I was dx May 6th and needless to say considering the time frame, this journey still seems surreal. However, these damn tissue expanders let me know constantly that this is not a dream.

My original dx was DCIS ~6cm in my left breast high grade--> 3. There was a spot on my right breast ~3cm that was biopsied as lobular neoplasia intermediate grade. I opted for a bi-lateral MX because the stress of knowing this was inside me was way too much. However, with reconstruction path I chose, I will still have risks associated with implants...trust me none of this is a cake walk with a clear cut answer.

The Mx went as planned, and final pathology showed no invasion from the DCIS on my left breast and sentinel node was clear. However, in my right breast the lob neoplasia was confimed BUT there was DCIS AND Invasive ductual carcinoma (IDC) micro-invasion that my biopsy did not show/test that area. Since you had a surgical biopsy a surprise like this is highly unlikely...I am not doing hormone therapy of any additional treatment because of risk vs benefit. (my sis died of uterine cancer - tamox is not an option and tumor board and BO + BS agreed the risks were too much)

Daily still is some anxiety and questions about long term, and I think that is part of the ball game. These boards are full of women with their journeys and thank GOD for the opportunity to come together like this. I find posts that fill my eyes with tears, and some of the humor brings me a smile, and a continued deep appreciation and awe of the human spirit. At the end of the majority of posts most women say --->> YOU have to feel good about what YOU decide...and I can't stress that enough and trust me that is a journey as well.

If you have any questions about the process of MX and recon to implants I would be happy to help. I don't regret my choice, but a MX is certainly not the right answer for all.

Peacetoall, are you having radiation on your breast that had the IDC? I too had "surprises" in my "clean" breast. I chose BMX with preoccupied implants. Thank God I did as all the diagnostic tests did not find it. I was planning on radiation in the cancer but now wondering if I'm going to be doing it in both sides. I just read my path report online. I'll meet with my doctors next week for the plans forward.

These decisions are not easy for anyone.

Unfortunately, these forums have many women who went with BMX and still ended up needing radiation. BMX is unlikely to require radiation, but it's not a guarantee. And there are women on these forums who had DCIS, BMX and still had mets years later.

I had very few SE's from radiation, and those I had were extremely mild—so mild that two weeks later I was able to take a European cruise involving many strenuous walking tours. And except for a darker areola, even those SEs disappeared.

My cancer was invasive, 1.3 cm, and grade 2, and I still chose lumpectomy + rads, followed by 5 years of an aromatase inhibitor (letrozole) because I was 10 years post-menopausal (and the risk of blood clots from Tamoxifen was too high, given that my family history is a cardiovascular train wreck). Most mets come not from undiscovered tumor cells left behind in the breast after lumpectomy (or normal cells in the breast that go rogue after lumpectomy), but from tumor cells that might already have been sent out years before diagnosis of the original cancer and lain dormant.

But I can understand “scanxiety,” though my followup mammos didn’t faze me. Many women opt for the “peace of mind” they believe BMX will give them. With family history, genetic mutations, or large tumors (or widely scattered multifocal ones) in small breasts, mastectomy makes sense and many women, even those who have no medical reason for prophylactic contralateral MX, opt for it anyway for the sake of symmetry—either remaining flat, or reasoning (accurately) that dual contemporaneous reconstructions more often turn out similar.

However, I’ve seen too many instances of throwing everything in the arsenal at one’s tumor and then getting local recurrence, new primary tumor or even mets. I find that “peace of mind” is often illusory and never guaranteed.

Every family member on my father's side has passed away from cancer. My father died Feb 5th, and I was diagnosed with DCIS-MI on 4/25. I opted for a double mastectomy and I did not care about the cost. I was 41 when I was diagnosed and I am now recovering from my Bi-Lateral Mastectomy (at 42). I have four children 19, 11, 10, 9. Ask a ton of questions and make a decision that is best for you and your family. God Bless you!

I was diagnosed with DCIS (grade 1). My oncologist game me these stats: 97% chance of no recurrence with radiation, 92% chance of recurrence with no radiation. I'm nearly 60 so hormonal treatment isn't something they would consider. She said that there are risks associated with radiation, especially if the DCIS was on the left side. I opted for no radiation. She was pleased with that decision, I think. She assured me that they will watch me like a hawk to monitor for recurrences. I trust their decision - I am followed at a major cancer centre. It's scary, this whole thing.....but in the end my way of coping is to try to forget it's happening and get on with my life. If it comes back, I'll deal with it. Anything could take me down at any time......DCIS is probably the least of my worries LOL. I cherish every moment of life now. Crap like this reminds us of life's priorities. God bless and take care.

Suzy, is this a typo?

"My oncologist game me these stats: 97% chance of no recurrence with radiation, 92% chance of recurrence with no radiation."

I'd like to know where she got both those stats, but especially the latter, 92% recurrence without radiation. I haven't seen that anywhere.

I was diagnosed with DCIS grade 3 ER/PR negative in my left breast In July. I opted for a lumpectomy. The first one left me with 2 unclear margins. I had the re-excision surgery two weeks ago and still have one unclear margin. Another re-excision surgery is scheduled for this Friday but I am waffling. I am strongly considering a Bi-lateral mastectomy instead. My BS said if this re-excision surgery is not successful I will need a mastectomy but he clearly favored another lumpectomy.

My decision to have a lumpectomy vs a mastectomy was an informed one. I read many many articles and agree with LisaAlissa that Bessie's posts were extremely helpful. But now I am getting weary. The lumpectomies have been easy--especially the second one--but I am beginnining to understand just how illussive this disease is.

I had extensive imaging done--mammography, MRI, ultra sound--& I naively thought that it would be easily located and removed. Not so the case.

So now do I I cut my losses and opt for the ultimate clear margins with a mastectomy & skip a second re-excision? I agree with what Chi Sandy said that peace of mind is illusory & not guaranteed. But I am not finding peace of mind right now at all and am not sure I will have it even if the second re-excision surgery is successful followed by rads. I don't trust this cancer that has invaded my life. It is very sneaky. And even if the pathology report says it is gone... I don't know if I will completely believe it.

As I have said, I am becoming weary. My positive attitude is waning. Today is Wednesday. I met with my BS yesterday... 2nd re-excision is scheduled for Friday. Any feedback would be most welcome

As you can see by my sig line, I had hormone receptor negative DCIS and opted (initially) for lx as well. I had one VERY close margin (not even 1 mm), and was wrestling with what to do about it, when I got a second opinion on my pathology from a dcis expert who recommended an mri, as my architecture type tends to be multi-focal. Sure enough, there were 2 more separate areas in an entirely different quadrant. I was literally supposed to go into rads mapping the day after I got the second opinion. Had I done so, and not gotten the mri that found remaining dcis, it is possible that I would have had a recurrence at some point; which would really have just been cells that hadn't been removed. Once the other areas were discovered, mx was strongly recommended as my only choice for maximum control (as well as aesthetics). I've now been 14 years NED and I am regularly thankful for the astute second opinion that may have saved my life. It is a sneaky disease. I am so sorry you are having to make this decision at this point, but it is a chance to (once again) review your options and pick the treatment that makes you feel the most at peace (I know, I know, that's a hard ask). warm ((hugs))