Deciding on treatment...

Spencer39

I've been recently diagnosed with DCIS of the left breast, with an unsuccessful lumpectomy. I can either get re-excision, followed by radiation and tamoxifen, or I can go for the gusto and have a mastectomy followed by immediate reconstruction. I would likely go with DIEP. My dilemma is that I am seriously considering having a left mastectomy prophylactically. I hate to lose sensation (definitely a foreplay killer), but I would have an increased risk of getting cancer in the left breast, and I'm worried I would just be a nervous wreck about it.  I also know that DIEP can only be done once, so if something came up later with the other breast, my options would be more limited. Anyone have a similar experience, and if so, what did you choose and why? It is so hard to make such a life changing decision.

Pi-Xi

Hello Spencer39!

I'm sorry to hear that you need to make this decision. I was in a similar position last year. A mammogram showed a rather large volume of calcifications, results of the core biopsy came back ADH, the excisional biopsy showed DCIS and the surgeon's recommendation was mastectomy. Possibly bilateral as she wanted to investigate calcifications on the other side (another core biopsy) which turned out to be nothing. I spent nearly two months oscillating between zero, one and two mastectomies dozens of times a day. I finally couldn't stand it anymore and knew I couldn't do this again in ten years so I decided on BMX. I was fortunate that I turned out to be a candidate for nipple sparing and direct to implant reconstruction. (I had no fat tissue to harvest for autologous reconstruction. ) Unfortunately, the pathology came back with 1.4 cm of invasive cancer. The prophylactic side was clear of cancer and I'm hoping it will stay that way. Ultimately, I guess I made a good choice. There are no guarantees. The decision-making process is awful. I wish you the best as you make yours!

Pi-Xi

MTwoman

Spencer, deciding between your surgical options can be extremely difficult for some women (and some just know what they want right away and never waver). Personally, I wanted lx, as I was only 38. I initially had one, but more areas of dcis (multi-focal dcis) were found on a post surgical mri. That put the old kibosh on lx, so I had mx. I never actually considered bmx. For me, it just wasn't something I wanted, or my team proposed. I have been NED for 14 years, and really don't regret it. I am not you, however. You need to make the decision that you will rest the easiest with. It's your body. There are some helpful threads that you might want to read through, as many women have made all sorts of choices for various reasons and it sometimes helps to read their stories and understand why. Try this one: https://community.breastcancer.org/forum/68/topics/806074?page=8#idx_222

or

https://community.breastcancer.org/forum/68/topics/846892?page=2#idx_32

Also, if you haven't read it, Beesie's thread on DCIS is pretty complete and there is much to be had there as well. ((hugs))

Lula73

Hi Spencer- I had IDC and DCIS in right breast with microcalcifications in left breast with high risk of developing breast cancer in either breast. Chose skin & nipple sparing BMX with immediate DIEP reconstruction. I'm very happy with the results so far. Things need a little tweaking but that is why they have a stage 2 surgery. It is disappointing to lose the sensation but I will note that its not a complete loss. I still have a significant amount of feeling in the skin of both breasts. I can feel it when my husband cups them in his hands. No feeling in the nipples though. With that being said, the nipples still respond to touch (which makes my husband happy) and cold. DIEP is definitely a bigger surgery than implants, but when I see all the issues women have with them with or without radiation I'm very glad I opted for bigger surgery with longer recovery to have natural looking, natural moving, non-painful breasts. Where are you looking at having your DIEP? Feel free to ask me any questions or PM me.

Sitti

Spencer39, sorry you find yourself here. There's alot of support and wisdom on these boards to help encourage you. Here is another link to a thread regarding your question as well. I wrestled with the same questions that yiu are wrestling with. In the end it truly is a personal decision that is best suited to you and your personal risk comfort level.

https://community.breastcancer.org/forum/68/topics/855267?page=1#idx_18

Wishing you the best.

ChiSandy

Latest research, from Clinical Oncology News, says that the risk of contralateral (opposite breast) cancer is extremely low with DCIS:

Contralateral risk low for DCIS patients

Confirms that with DCIS in only one breast, BMX is probably overkill.

ChiSandy

Of course, should you choose UMX, it’s reasonable to want symmetry. And that is your prerogative, and insurance is required to cover whatever it takes to achieve symmetry. But prophylactic MX on the other perfectly healthy breast is not oncologically necessary.

MinusTwo

Except that a number of us have had a BMX and cancerous lesions or DCIS were found in the "good" breast that were not seen on imaging. It's a hard choice but I'm glad I chose BMX for symmetry and ended up excising more cancer all at one time.

LAstar

Hi, Spencer39 - I was in the same position and found these decisions to be GRUELING. I opted to try a second LX which also resulted in involved margins, so the path was clear to MX for me. The second LX took less recovery time and gave me the peace of mind that I had tried everything. Even if you have clear margins after a 2nd LX, you could still opt for MX if you wanted to avoid radiation.

I had an MRI between the two LX to get a better idea of extent. You might ask your BS about this. I've seen some research indicating that MRI is useful for determining the extent of grade 2-3 DCIS.

I chose to have a BMX because of suspicious spots that were found in the contralateral breast during my MRI. The pathology indicated that those were false positives, possibly from having an MRI at the wrong time of the month. Two lymph nodes were taken at the time and were clear, but I have low-level lymphedema that I have to manage now.

I initially had SGAP (using tissue from the hips) for reconstruction at the time of my BMX. The reconstruction was probably more demanding than the BMX and my 11-hour surgery required a good 6 weeks to recover from. I had a complication (SGAP is more prone to necrosis than DIEP due to smaller blood vessels) that caused the cancer-side breast to shrink over the next couple of years, so I had a uni-DIEP to correct this. Now I have a wrap-around scar on my hips & belly and numbness at these donor sites as well in my breasts.

If my complication had been on the non-cancer side, I would have really regretted opting for BMX. I had sort of thought of my breasts as a matched set, but it's a little more complicated than that! It was a tough decision because my breasts are large and I would have needed to have some augmentation to achieve symmetry (or at least I thought I would - my breasts are still huge!), so I figured I would have surgery that would reduce my future risk as much as possible.

Breast cancer feels like an endless sequence of choices between Crappy Option A and Crappy Option B. I feel lucky to be a few years out from surgery and feeling strong and pretty darn whole given I had 6 surgeries. I can't beat myself up too much about the choices I made given what I knew at the time. I can't even say at this point how I would choose if I did know all I know now. When you get on the other side of the hard decisions and healing, life is pretty sweet and simple pleasures take on new meaning. Best wishes for a smooth journey to that sweet place called "Done"!

pinkvictory

hi spencer39. I am right here with you. I was also recently diagnosed with DCIS following a lumpectomy. My margins also were not clear. I agree with LAstar, "Breast cancer feels like an endless sequence of choices between Crappy Option A and Crappy Option B. " I recently called my BS with my treatment decision of bmx. This is always on my mind, even in my sleep. I wish I could fast forward to a happy , well adjusted life with all of this behind me. Wishing you peace of mind throughout this process. You are not alone. Thank you for your post, as it is helpful to me as well