Any one else thinking about having a mastectomy for DCIS?

drala

Hi,

I really appreciate this site. I don't post very often but it has been so helpful, reading so many stories by so many brave women.

Is anyone else thinking of have a MX with DCIS?

I had a needle biopsy showing ADH and in an abundance of caution my doctor recommended and excisional biopsy. Unfortunately, the ADH got "upgraded" to DCIS and the excisional biopsy ended up being a lumpectomy. Now BS is recommending radiation and tamoxifen.

I don't want the side effects of tamoxifen. I have a family history of uterine cancer, personal history of mood disorder and take a medication that has an interaction with tamoxifen that can cause fatal arrhythmias.

I am going to ask about a unilateral mastectomy I'm stunned that I am making these choices. Breast cancer vs. uterine cancer.... don't want either of them!!! My thinking is with a MX I may be able to avoid tamoxifen and radiation.

So yeah I'm going to ask about the MX but feeling shakey. I'll ask BS what he thinks at my next appointment.

Marena

Hi Drala,

I’m a bit earlier in the process than you -diagnosed on 3/14 following a biopsy, just had breast MRI last week & awaiting my first mtg with BS/team next week on 4/5, but I secured copies of my pathogy & imaging reports and have become a mad researcher, looking into potential tx options while enduring oh so many sleepless nights over the past couple of weeks, preparing for this meeting.

I’m in a high anxiety state, still not wanting to face the reality of having a cancer dx, but alas, I realize I have no choice but to figure out how to face this life changing (however unwanted) event.

In exploring the likely tx options I find myself increasingly filled with dread. With a medium-high grade & a solid shape with evidence of dead cells, my DCIS is considered aggressive. Although no evidence of invasion as of yet, there is risk for sure. I do want to ask about Oncotype genetic test, but guessing lumpectomy, tamoxifen & radiation will most likely be recommended, and I’m not feeling good about any of those options. Lumpectomy alone could be tolerable, although I am small breasted & the malignant area is 3.5cm so could be cosmetically difficult & the concern of recurrence potentially high. Tamoxifen side effects seem too much to me - I’ve had a history of depression and insomnia myself & generally medication averse...the impact of radiation seems intolerable to me as well....

All this being said & not having fully wrapped my head around it all, it almost seems like the “best” option would be MX. I can’t believe I’m even saying that at this juncture, but I keep returning to it in my mind even though it’s the last thing I can imagine going through!

So I get some of where you are coming from & feeling very shakey too!

I know I “should” be grateful that I have a treatable form of BC that was found early, and may be jumping too far ahead of where things are at in my process right now, but treatment options just seem so bleak to me in this moment...

I’ll be interested to hear what you decide as I head into being presented with options and choices myself.

ReadyAbout

I am 49 and have DCIS papillary carcinoma and my MO said Tamoxifen doesn’t provide a huge Benefit with early DCIS so I’m skipping it. I had a lumpectomy 5 weeks ago. Meeting with RO next week to go over my Oncotype score. The initial path report from surgery suggested high grade, which surprised the RO and is why she sent it out for Oncotype. I am leaning toward a DMX because I have a vascular condition that may respond terribly to radiation (RO was going to check with colleagues at Duke to see if they’d ever done radiation on someone with my condition) AND I have a heart condition, so having radiation done near the heart doesn’t seem like the brightest idea. The RO wasn’t worried about radiation affecting my heart, but she then again, she didn’t have a heart attack at 41, and I did. (I am an avid runner, so clearly “clean living” doesn’t always pay off!)The radiation concerns me the most, which is why I’m leaning towards mastectomy.

bluepearl

If your breast tissue is "active"...ie...lots of DCIS, my choice (and only my choice) would be a mastectomy. Local recurrence is lower for mastectomy. I just don't have enough resiliency to deal with too many breast cancers...two was enough. I wanted a double mastectomy the first time around but they said only 5% chance a second cancer would occur in other breast. yep. I got the 5%. One surgeon did recommend the mastectomy because my breast tissue was "active"...so off that one came.

Nursepatient35

I was diagnosed with DCIS in one breast and was told I'd just need a lumpectomy by my primary care doctor. I saw a surgeon and she also said I could do a lumpectomy but would have to pair that with 6 weeks of radiation and 5 years of tamoxifen. I opted to just do a bilateral mastectomy and I don't regret it one bit. My other breast showed no cancer but my margins on my DCIS side we're close. I think if I would've done a lumpectomy, it may have needed to be repeated. Also, I don't know how I would've responded to the tamoxifen or radiation. I guess surgery is big too, but it just didn't scare me as much as the other stuff. Good luck with your decision and I'm sorry you even have to deal with this.

Rrobin0200

I sure as heck did. My one year surgery/anniversary is actually tomorrow. Once I heard DCIS, I knew it was time for them to go. I realize that the recurrence rate for MX is the same as LX, but I didn't want the constant scanxiety. Plus, in my mind, I wanted the most proactive choice. And I don't regret my BMX.

drala

Hi Marena,

Thank-you so much for your reply!

I'm sorry you are also struggling. I also find myself having that thought "...mastectomy is the best option......................wtf?!" Still sinking that this is really happening, but I feel hopeful. I am going to ask for the unilateral mastectomy. I think my quality of life will be much better that way. I am a worrier when it comes to health, younger sister died of ovarian cancer at 36 With tamoxifen, I think I would be more worried about my health if I took it. I know I am lucky to be able to refuse these treatments. If I had IDC, I would absolutely take those treatments.

Radiation also sucks....increase risk of lung cancer? I used to smoke....

I'm glad to hear other women considering this and especially the brave people who share their stories of what it's like to go through this. I've learned so much here and and what a blessing to known your not alone.

Thanks everyone!

A soon-to-be Uniboober,

Drala

drala

Thanks for sharing Rrobin0200, you seem triumphant!

LisaK12

Yes, there are lots of us. Take your time to think through your options and get second opinions. Read as much as you can. This is not a decision to rush. I am going to get a mastectomy for DCIS but made this decision after multiple meetings with BS and RS, two excisional biopsies with positive margins, MRI, plus a consultation with a radiation oncologist and also got a second opinion from a totally separate source. The whole process took over three months. Do your best to identify your own biases and those of your doctors. (We are all biased and it behooves us all to know what our biases are. How much will a mastectomy reduce your risk, and is that reduction in your risk worth the loss of a breast to you? Only you can make that decision. Also, there will always be some amount of risk -- some people still get invasive breast cancer even after having a mastectomy.) The best doctors are open about their biases -- e.g. they will admit they are biased in favor of breast conservation, or that they are biased in favor of reducing the risk of invasive cancer. At least that way you can factor those biases into your decision-making. The best of the best will make recommendations that go against their biases when circumstances warrant, but will also give you the pros and cons of each decision. E.g. how would having radiation affect your reconstruction options, if you decide you want reconstruction? I've learned a lot from this forum...good luck to you.

Juniper81

I went for a mamogram and Ultrasound that led to a byopsy that showed DCIS. LUmpectomy was what I was told then i had an MRI and it shows more DCIS and they would need to do a MX. THe other side shows areas of concern. I could get a MRI byopsy but i decide to get a BMX . I do not want to have to go through this surgery twice. I am only 36, have Negative Braca but I had a rare form of ovarian cancer before I do not want to take any chances.

I am scared, upset, angry, and all emotions at different times but i guess in the back of my head I know its the right thing.

Hugs

TINYWEND

I was diagnosed with DCIS in January 2017 & had Mastectomy & Lymph nodes taken. They thought I may need Radiotherapy, so opted to leave reconstruction but was very lucky in that the surgeon was confident that he had got it all & I didn't need Radiotherapy. The surgeon said the tumor was 10cm & my only option was Mastectomy.

drala

So sorry you are going through this Juniper81 and TINYWEND. Thanks for sharing from your experiences. It really helps.

Moderators

and you too, drala, you're going through so much. We greatly appreciate all of you sharing, and helping each other through this difficult process.

TINYWEND, welcome to our community. We know how tough it is to digest all the information. We are pleased you found our amazing community!

PNWBCHgirl

I had DCIS in bothbreasts at separate times ( for details look at my profile) I ended up with a Mastectomy both times. I hcouldnt get clear margins iwith a lumpectomy. Then the other breasts was found after a reduction to match the reconstructed side. I had no chemo or radiation either time and take no hormone blocker

MBPooch

I was diagnosed with DCIS and Pagets in the left breast last October. I knew I would only feel like I could rest "easier" by doing the BMX and I never looked back. I had previous biopsy's that were negative in the healthy breast and wanted to reduce the risk as much as possible of ever having to go through this again. I was a candidate for direct to implant and highly recommend to anyone who is interested in reconstruction and DTI is an option. There was something about waking up from that procedure with breasts similar to my own and knowing that I wouldn't have to endure another surgery that made the process a bit easier to get through.

mountainmama406

so much good advice here for you! I also went straight to bmx and direct to implant.

Reading that you’re wanting to try avoid tamoxifen. In my case if I had just done the left side I still would have taken tamoxifen to lessen chances of anything happening in the right. I also would have done some cosmetic surgery on my right side to match the left side. I figured if that was the case then I’d get most symmetrical results and lower chances, avoid drugs, not have lx/radiation mess with any later options on reconstruction, etc on doing both sides.

Any other day would you consider taking away your boobs? Probably not. It’s a big decision. But I felt like it was also a normal and easy one to make for my immediate and long term health

Paco

Just chiming in here about the lumpectomy / rads option, for anybody who's still deciding.

I asked my RO about having radiation now and what that would mean to any future treatment options. He said that if I should have a recurrence down the road, say after 8/10 years, it would be possible to have a second round of radiation. In fact, there is a woman in treatment at my same time and she said it was her second bout with BC, the first she had an LX/Rads 23 years ago and this time, LX/Rads/hormone therapy.

Just throwing that out there, for future readers.

drala

Thanks so much everyone for sharing your experiences and insights. It is so helpful.

I saw my BS today and he lost it when I started talking about considering MX and my concerns about tamoxifen. He even swore at one point because he was so upset that I was questioning the medication. He also said he would like to get my psychiatrist involved regarding my level of anxiety and that bothered me as well. I feel that my concerns are not being considered as valid and that he is writing it off as a symptom of my mental health diagnosis. In my experience it would be better to never tell anyone about that kind of diagnosis because then anything you express can be written off as crazy and people often stop listening or taking you seriously.

I mentioned the black box warning for tamoxifen and he told me I was wrong, that there was no such warning. I knew he was wrong and I emphasized that I was sure that was the case. He told me to get off the internet and just trust my doctors. Then he said black box warnings were not useful anyway and that aspirin should have a black box warning because it causes ulcers.

After he left the room the nurse explained that he has had patients who decided not to take tamoxifen come back with invasive breast cancer and have bad outcomes and they don't want that to happen to me. So I understand he was coming from a place of concern. Still, the appointment was very upsetting and I left crying.

So now I'm not sure what I'm going to do. He did say I have some time to figure it out. If I choose radiation and tamoxifen then he said I should start radiation within the next 4-5 weeks. Sorry to go on and on and thank-you so much for your replies.

My head is spinning.

Marena

Drala

First, I want to thank you for your response to my post and for sharing more of your thoughts & experiences thus far in your process. I am finding this forum to be the only place that feels safe these days. I'm right behind you -1st BC appt.this Thurs.

Second, I am outraged that you experienced such disrespect in response to your effort to be informed & advocate for yourself with your BS. So sorry you had to go through that all the while sitting w a cancer diagnosis & the unknown, simply wanting to protect both your mental & physical health. I have been harboring a big fear that I will have a similar encounter, but trying to keep an open mind & not be on the defensive before I even meet the BS...I feel in such a vulnerable position entering this new BC world where "experts" who don't know me, seem to (and will) have power & authority over my body...I know I don't have to do what anyone says if it's not right for me, but I already feel weakened by my diagnosis -not sure I have the emotional energy to fight biases (Spoken or unspoken) & take on the experts!"

We all deserve to have our concerns met with empathy & understanding in addition to theeducation and advice. It is a shame you found yourself leaving such a significant meeting in tears. My heart goes out to you.

Continue to let your voice be heard.

As for head spinning, I feel you there as well! Been thinking I need to get back to practicing daily meditation. I need to stay clear headed and grounded in myself in order to face next steps and beyond...

Nursepatient35

Drala,

I don't know how many options you have where you are at but I would meet with another BS. I've worked with many doctors and surgeons over the years and some can just be jerks. Yours sounds like a jerk. If you're leaning towards a mastectomy, no BS should make you feel that is unreasonable. Lots of women have them done for DCIS or even prophalactly. If you're leaning towards a lumpectomy, they should be able to explain the pros and cons of pairing that with radiation and tamoxifen and you ultimately get to decide. A doctor should never throw your anxiety diagnosis at you. Of course you're anxious, you just found out you have cancer!

If you're wanting to do reconstruction, I'd base your first priority on finding a good PS and second on the BS. The mastectomy is not a surgery that takes tons of skill to do. The reconstruction part is more of the intricate work if that even makes sense. But definitely don't put up with that crap. I've been in situations where after a doctor talks to a patient like that, I have to come in after and try to smooth it over. That surgeons nurse probably really wanted to say, I'm so sorry- he's been a real jerk to everyone today.

Good luck to you and don't let anyone make you think you're doing the wrong thing in whatever you choose.

2timer

I agree with you.

11 years ago I had a small amount of low grade DCIS and I opted for the lumpectomy/radiation and tamoxifen. I remember going to see my oncologist for the first time to get the rx for tamoxifen and I was talking about how worried I was about the bc. And he said "if you were that concerned you should have gotten a mastectomy". I was kind of floored because that wasn't really discussed with my BS (a very good one btw). I had already finished radiation by then so it was a moot point. 5 years of dealing with the tamoxifen (I tolerated it pretty well though but there were still issues) and call backs/biopsies of the same breast and I thought I was pretty much done.

Nope.

They found a tumor in the same breast after 5 years of tamoxifen and being "closely watched". It was high grade and put me at stage II. That's when I got the mastectomy -- bilateral this time with reconstruction and I've been on anastrazole for 4 years with moderate side effects. I couldn't have radiation because I'd already had it. I found out this morning that I have significant bone loss in my spine -- osteoporosis most likely due to the anastrazole -- yes I take calcium daily and have since the beginning. I'm in the shower this morning thinking -- once again -- that had I just gotten a mastectomy in the beginning my entire life (and future) would be different. I'm not kidding.

Again, I had great and caring doctors (still do) but we need to be honest about our healthcare system. The hospital can make tons more money by doing a lumpectomy with radiation and 5 years of tamox (and doctors appointments). And I am living proof that it sometimes doesn't work. I read all the statistics about DCIS treatment and outcomes and at the time it seemed like I was doing the right thing. I beat myself up all the time over this and today is really a bad day for me.

My advice to you is to get the mastectomy and be done with it.

Collybluebell

This is such a personal decision and something you must make careful of what you need.

Any decision you take will be right for you within the circumstances you are in.

I was dx in 2001 with DCIS low grade in my right breast upgraded from atypical cells after 2nd lumpectomy with no clear margins. A mastectomy was recommended although the DCIS was low grade it was widespread. I was completely in a state and just didn't know what to do. I had two small children at the time; trying for a third baby and the idea of mastectomy with tamoxifen meant no more babies, menopause early and I have a slight blood clotting condition which heightened my risk.

In my mind the only way I could move forward was to have bilateral mastectomy which was a drastic approach but meant I could have my third baby: no drugs and not the anxiety of always worrying about the other breast. My PS was fine with my decision but my oncologist tried to dissuade me. I knew it was drastic but I know me.

Do I wish I still had my second breast : of course I do. Do I feel safe: yes!!! I simply did what I had to do - mourned my old me and went on to have a baby two years later.

I had silicone implants because this was the softest and most natural look and the easiest recovery time. I am now 15 years later - in my mid 50s and looking to have a DIEP reconstruction. I have not visited these sites since and never looked back.

Weigh it all up: you didn't ask for this to deal with but you must make a decision and then just make peace with it and get living with it.

Pray about it too.

Wishing you the very best at this worrying and horrible time. PM me if I can help you in any way.x

VegGal

Six mm of DCIS was discovered two years ago. Within seconds I had decided on a BMX, in part because I had been with my mom 7 years before when she had her uni, and I saw how "easy" the surgery and recovery was. That took out a lot of the fear.

When I saw the BS for the first time, she outlined the possible treatment plans: LX with rads and maybe an AI, uni MX with possible AI or BMX. She sighed with relief when I told her my choice, and even stated that that is what she would recommend if I were her mom or sister, too. Who knows, she may say that to EVERY patient, no matter what their decision, but it helped me in that moment.

I had the BMX and 3 months later had my exchange, and 15 months later I redid the recon. I have not for one second regretted it.

amygil81

Drala, my DCIS was in several places within my breast, so I had to go straight to the mastectomy. I was sorry to lose my breast, of course, especially the sensation from my nipple. But I'd survived bone cancer as a teen. My breast surgery was small by comparison, and I didn't need chemo. I cried plenty when I saw myself one-breasted in the shower, and again when I got fitted for my prosthesis, to fill out my empty left bra cup. But it could have been far worse. Living with only one breast is fine for me.

This is an intensely personal decision, and only you can decide what is right for you. I wish you the best in figuring out what that is, and in all your BC journey.

Jme14

Newly diagnosed 3 days ago with low grade DCIS in one breast. I have already had the lumpectomy and now need to make a decision on my next step. I have a choice of radiation with approx 10 yrs of tamoxifen or DMX with reconstruction. I meet with my docs next week to discuss these options. I'm terrified of the recovery from DMX, but also have 2nd thoughts on taking Tamoxifin. I'm 55. Anyone have any regrets on choosing DMX?

VegGal

No regrets. The relatively short recovery was far preferable to years of discomfort and possible complications from taking an AI in my opinion.

CarlaJG

Hello. I was diagnosed with DCIS high grade (negative receptors). I am 46 and my mom was diagnosed when she was 49. I am having a very difficult time deciding on lumpectomy with radiation or mastectomy with reconnection. I am small breasted and not attached to my breasts, but would like them to look nice if at all possible.

Nursepatient35

CarlaJG,

I was also small chested and my only complication from a bilateral mx was my tissue expanders had to go under the muscle vs over due to not having enough skin to cover them. This made it a little more painful recovery but after 4 weeks, I felt fine. I do not regret my decision one bit and I'd do it all over again. After the mastectomy, I heard along the way that I don't have to worry about this or that since I did choose mx. With your family history, I'd worry about recurrence more with a lumpectomy. In the end choose whatever treatment will give you the most peace of mind. I would say the only perk that has come out of all this for me is that I'll have bigger boobs. I used to be an A cup and I'll go to a B.

Lula73

For those of you looking at mx, know that there several different options when it comes to reconstruction. That was the one thing I wish someone had just put in front of me vs. just telling me implants. It would’ve saved me a lot of time and trouble. So i will do for you what no one did for me:

There’s natural tissue or autologous tissue reconstruction (usually DIEP flap where they basically give you a tummy tuck and use that tissue to build the breasts or SGAP flap where they do a butt lift and use that tissue to build the breasts); it can be done at the same time as mx or later.

There’s Implants and they come in saline or silicone, textured and smooth; it can be done at time of mx (hard to find surgeon who does it though) or later (they place tissue expanders in temporarily and fill them weekly til exchange surgery).

There’s also just going flat. Just because you choose flat does not mean you are stuck with scars and excess skin. A PS can really make a difference here.

Hope this helps! Feel free to ask questions!

GmaJoLynn

Hello drala, I was diagnosed with grade 3 DCIS in January of 2016, at the age of 53. I was told a lumpectomy and radiation was what I needed. However, my breast cancer was on my left side and I read that radiation could cause heart trouble or lung trouble even 10 years after the treatment. That's when I decided to have an MX. I don't regret that decision at all and my surgeon said that is what he would have advised for his mother, sister or daughter. Although I am glad that I had the MX, I regret having immediate reconstruction. I had previously had a breast lift with small implants (the PS that did this surgery told me that doing a lift without implants would look like a mastectomy given my small size and loss of volume - how ironic!). But due to that surgery my skin was already thinner than normal and I lost half my skin to necrosis when I had immediate reconstruction, which is why I would NEVER advise having immediate reconstruction. I have had 5 reconstructive surgeries and have never been happy. I wish I would not have had reconstruction and I am now considering (and it may be mandatory anyway due to skin being dangerously thin because I lost so much due to the necrosis) implant removal and going flat. But that is a different topic and a long story. Only you can decide, all I can tell you is that I'm glad that I had a MX and not radiation over my heart. I can live without my breast, but not without my heart. I hope you are doing well and my heart goes out to you because I know how hard it is to hear that you have breast cancer, and I know how hard the decision that you are faced with is...

peyton3

Hello GmaJOLynn,

Please let me know if you decide to have your implants removed. I have had a bilateral mastectomy followed by reconstruction in 2016 and then another surgery to remove these implants and have smaller implants put in over the muscle in August of 2017. Unfortunately nothing has worked for me. I am in constant pain, the burning, iron bra symptoms that PS do not tell you about. I would really like to have them taken out and be done with it, but I am so afraid it will be worse.