So confused - can't decide on treatment option

jules72 · July 2015

Hello ladies,

I really could use some help. I know decided on treatment is a personal choice but I've never been so torn in my life and I just can't decide between a mastectomy and lumpectomy with brachytherapy,

Info: 2.8 cm apocrine DCIS cribiform, grade low & intermediate, no necrosis, ER-/PR-. I am 43 and already have above the muscle breast implants. Had lumpectomy on 7/2 - confirmed DCIS and size but not enough margin in the area right next to my implant.

Option 1: additional surgery to break the capsule around implant and get the clean margin - that is the only area left to get at is the capsule around existing implant. Then doc would replace implant with newer one (mine is 17 years old), then do brachytherapy. Then likely replace implant on left breast eventually for assymetry.

Option 2: Mastectomy with TE and later reconstruction under the muscle on right breast and later replace above the muscle in left breast for assymetry.

When first diagnosted I really wanted a mastectomy. Then docs said there is NO difference in survival between the two options. Frankly it's very hard to believe that and wrap my head around it. I mean with lumpectomy I'd be leaving a larger environment for this to come back and granted while we'd likely catch it early there's no guarantee right? I have dense tissue, rare form of dcis, er/pr- which I'd assume is more difficult to treat, etc. But the lumpectomy/brachy sounds great but it seems very complex to take more margin, replace implant, brachy, etc. brachy is not studied long term especially for women under 50 and then I'd have higher recurrence risk.

I feel like if I choose lumpectomy/brachy I'm playing with fire. How do I look at my young kids and tell them later if it comes back that I chose a less aggressive option? Also then after rads mx with implants isn't an option. Not to mention the anxiety with constant checkups.

If I choose mastectomy I'm most concerned with whether I'll ever feel normal. I don't really care about sensation as much but I don't want to feel uncomfortable or foriegn and I can't really imagine how different a mastectomy and implant will feel versus the tissue and implant I have now. Does it ever get to a comfortable normal versus a numb, balloon feeling?

I guess I'm back to leaning toward a mastectomy but only if I have more confidence that eventually it feels good/normal such that I can live my life and put this behind me. I want to continue to be active and fit without physical limitations or constant annoying symptoms for the rest of my life.

It is such a hard decision. I'd love any input from all of your experiences.

Thank you so much in advance!

Julie

ballet12 · July 2015

Hi Julie, why do you have to chose brachytherapy as the only radiation option, if you are not sure about it's efficacy in younger women? There are other options--Canadian protocol, for example, which is a shorter course of radiation (16 days, usually), but with a higher dose. Is the brachytherapy required because of the implant? I also have the apocrine DCIS (discussed this with blinthedesert-who happens to also be a cancer researcher), but with a small ER response, PR negative. I did some reading on it (after your initial post) and actually seemed to find that Apocrine IDC is quite treatable (granted not with hormonal therapy), if a recurrence did occur. One thing is for sure, once you do the mastectomy, you can't go back and undo it, whereas you can do the lumpectomy and later do mastectomy if you choose it.

jules72 · July 2015

Thank you for responding ballet12. Yes on the brachy. My plastic surgeon said whole breast radiation with the implant I already have is not a good choice

april485 · July 2015

jules, sorry you find yourself in this situation. It is true that lumpectomy carries with it the same (and some even say better) odds of survival as mastectomy. BUT, you should always go with your comfort level. For me, it was too much for my diagnosis in my opinion so I went with lumpectomy and rads and AI. Of course, my margins were less than 1mm so that meant a second lumpectomy. I don't know if I would have changed my mind had I known I needed surgery x 2, but I do know that I am comfortable with my choice. Hopefully, you will choose the best route for yourself and what you can live with.

turtlelady · July 2015

Hi Jules, Yes it is a difficult choice, with no truly "right" answer for everyone. Many ppl have a lumpectomy w/rads and do just great. Some of us, however, chose that "less radical" route and have complications as a result of that choice. The wire placement procedule (which is not done with MX) left me with PTSD. And rads left me with lymphedema. The LE makes further surgery difficult. You cannot always go back and get a MX following LX. Of course, MX can also result in complications. And yes, the stats on death come out about the same. But what some folks don't grasp is that survival isn't the only issue. With LX, there are *more* procedures, each with their increased risks of complication. I'm living with PTSD from the wire procedure which would not have been done with MX. I'm living with truncal LE from rads that would not have been done with MX. The LX breast is swollen, twisted and painful. And it is still there, vulnerable to new tumors, unlikely to heal well from any additional surgery. I will wish for the rest of my life that I had chosen BMX. Friends who have chosen that route are back to normal activity, while I'm struggling a year later. It is simply FALSE for anyone to suggest the LX is always easier. I can't answer your question for you, but don't make you decision with a mistaken impression that LX w/rads is always simpler than MX. With MX, you're done. With BMX, your worries can be close to 0%.

have2laugh · July 2015

Jules72-I was also 43 and my youngest was three when I was made the decision between another lumpectomy and mastectomy. Not easy and I still can't say I am 100% comfortable with my choice-we never know what the future holds. Here's what I can tell you from my experiences over the last year and a half-continued monitoring is anxiety producing and expensive. I was at a point I wished I had opted mastectomy due to truncal lymph edema and I even got second opinion regarding doing this. All advice was be patient-much of this may be radiation related. I have seen and continue to see improvement in my truncal lymph edema and it is finally manageable but I made life style changes that help-sounds crazy but switching jobs from one with hour commute each way made a difference for me-cut my 12 hour day that was really 13 from 14-15 hours. At this moment with negative MRI and mammogram under my belt in June I am happy with my choice. No decision is easy and there are risks with either choice but do what you feel is right for you and just know in your heart you made the best choice at this time. All the best.

jules72 · July 2015

Thank you all so much for sharing your experiences. It helps so much to hear from others who have gone through this. I don't feel so alone and am feeling more confident in making a decision. I will add all of you to my prayers tonight and wish for continued good health for all.

have2laugh · July 2015

Also there seems to be some variance on what is an acceptable margin so be sure you ask you surgeon what they consider clean. My surgeon and RO needed to confer regarding this. The latest recommendations they went by stated margins were clean if no evidence of DCIS touching margins-I started radiation with two opposite margins at <1mm but not touching the margins. This changed my radiation plan and I know some surgeons want larger margins so best to ask-what kind of margins are they looking for? It's a lot and you will here different treatment plans but just know you are the most important person in the plan so don't be afraid to ask questions.

So confused - can't decide on treatment option

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