unilateral or bmx?

JLZSAN

First of all I am totally overwhelmed and stressed out!  I went in for my first routine mamgram Jan 17th.  I was then called back for additional mamms on Jan 18th.  The Rad suggested a steriotactic biopsy.  I went in on Jan 24th with BS for biopsy.  On friday Jan 27th I recieved a phone call from BS stating I had DCIS in both biopsy sites.  I met with BS in her office on Jan 31st to discuss options.  SHe stated that I have DCIS low -intermediate grade and she believes it is multicentric. ALso positive for E/P. She suggested mastectomy.  WHen i suggested bilateral she almost became defensive that too many women unnecessarily remove normal breast tissue just for piece of mind. She claims i would be heavily monitored.  I keep going back and forth unilateral verses bilateral. 

My personal history is I am 40yrs old mother of 3 (ages 13,11,8) The only family hx of BC is my dads sister in her late 60's. I am a chiropractor and have my own office.  So I am worried about recovery period etc. 

THis is horrible- just when I feel like I am making a decision, it changes. Im at a complete loss.  Everytime I talk about this I cry.  Everytime I look at my kids I cry.  I am normally a very strong independant woman.  My husband is very supportive and would stand beside anything I decide.

My BS explained that dcis doesn't go to the other breast however since having dcis i am at a higher risk of develping a different cancer in the other breast.   Does anyone know the risk percentages if I monitor vrs normal breast mastectomy? I have a employee who had the same and had BMX (7yrs ago and doing well) I have a friend who was in her late 20's have the same and do a unilateral (14YRS  out and doing well). 

I am also stressed about the recovery since i will be off work and basically have no disability insurance.  So financially this is terrible for my family. Is there a difference in MX/BMX recovery. 

I have an appt with PS on Feb 6th and Mri on Feb 9th.  Any advice is greatly appreciated.

Anonymous

JLZSAN-  Sometimes it helps to know that someone out there completely understands what you're going through and I do- along with a lot of other women on here.  I was DX with DCIS on one side, my son was 13 at the time, some family history and completely unsure as to what to do.  The only good thing you can say about DCIS is you have time to really research, and soul search, before having to make a decision.  No one can make this decision for you.  (Believe me, I tried to get my husband to and he said, "No way!" but supported me in whatever I decided.)  The biggest surprise for me with BC was all the decisions we need to figure out on our own with no clear consensus from our doctors.  I think, ultimately, it comes down to your gut and what it's telling you is right for you.  I can only tell you why I chose BMX or MX.  Now that I knew my body was capable of making even one cancer cell I wanted to eliminate as much risk as possible.  I knew I would be a total emotional wreck with every future scan.  I didn't want to have to go through the whole thing again (tests, more tests, dr visits, MX, recovery, etc) if it did happen in the other breast.  I just wanted it all done once (and I don't think the recovery was too much harder doing both as opposed to one side but don't know that for sure).  And, sorry here's my vanity coming out, I knew there was no way any PS was going to be able to match the MX side with my natural breast.  I didn't want to look in the mirror every day and be reminded that I had cancer.  I wanted to look "normal" or as normal as possible.  But these are all personal things for me just like your reasons are personal for you and there's no right or wrong decision.  Whatever you decide you will find amazing support on here from both sides.  I know it can be overwhelming and the beginning of all this is the hardest time of all while you try to figure it all out.  I found once I decided on a plan of action my head stopped spinning and was able to move forward with my decision.  I say listen to your head, your heart and your gut and you will know what to do.  (((hugs)))

Corrie

Hi JLZSAN,

I'm so sorry you have to go through this.  It's an awful time, when you are waiting and trying to make decisions.  It does get easier, I promise.  I was diagnosed at 31 with breast cancer in my right breast.  I did not have the BRCA gene mutation and no family history.  The first surgeon I saw recommended a mastectomy of the right breast and told me she was in my corner if I decided to get a double mastectomy. 

 I decided to go for a second opinion.  This surgeon did not  prefer mastectomies and said many women regret it.  I am a worry wort and felt I would worry far too much with just a lumpectomy.  Plus they would have to remove 40% of my breast. Yikes!  Take it all I said.

So I went back to the first surgeon and told her I wanted a double mastectomy even though I did not have the BRCA gene nor did I have any signs of cancer in my left breast.  Her advice was to sleep on it, once the breast is removed there's no turning back.  You can always have it removed later if you choose.  I thought that was great advice.  I wanted to focus on the cancer first, so I had my right mastectomy in October, went through chemo and radiation....then I still wanted the other breast removed.  So the following june I had the second mastectomy.  It gave me time to think about it and honestly, I do not regret it at all.  My Dr. was supportive and insurance covered both, as they should.  I know financially, two surgeries may be something you need to consider.  i was very fortunate with my insurance.

I guess my point is, don't rush the decision and find a doctor who's on your side.  Get a second, third, fourth opinion if you want. I don't knwo the statistics as they differ so much depending on the stage, type, etc.  Hopefully when you get your MRI they will go over all of this.

As far as recovery goes, the second operation was so much easier.  It could have been because I went through it once or because they didn't take any lymph nodes.  I don't know, but it was the perfect decision for me.  I'm sure you will make the right decision for you!  Good luck and I'll be thinking about you.  If you need someone to talk to, message me and I would be happy.

Thanks,

Corrie

puce

Hi,

I chose BMX with DIEP reconstruction.  I had IDC and DCIS in left breast only.  No lymph node involvement.  I was scare beyond belief.  I am 39 and have 3 kids, 9, 5, 8 months.  Recovery was 3-4 weeks to carry the baby and 6-8weeks to be back to normal.  I sent the kids to my brothers for the first 2 weeks.  You need about 3/4 days in hospital and another week to regain upright posture and stop narcotic/get drains out.  Would I do it again? Absolutely.  My foobs look good and feel all mine, don't love my belly incision but PS will fix it when I do my 2nd surgery for nipples. 

I chose the have BMX because in 10/15 years another BC or another surgery is not going to be more convenient.One surgery is enough.

Good luck with your decision.

No more mammos, just MRI's and piece of mind.  I don't want to regret this later.  I want to live!  BTW my husband loves the new me, loves the love handles being gone from the lippo.  Never flintch about scars or breasts.  

JLZSAN

Thank you for the responses. This site is a blessing for me.

A few more questions I have are: my BS will do a SANode biopsy before

the mastectomy the same day. If Dcis is non invasive and I am low to intermediate grade why check nodes? What are my chances of it being in the nodes - I had two biopsies on the left breast first site showed 3 segment 1-3mm, 2nd site showed fragments 1-2 mm. What is HER? Honestly went into mammogram as no big deal. Repeat mamm I chalked up to this was my first and this always happens. Even when I was told need stereotactic biopsy- chalked it up to bad rad person. At biopsy questioned the BS heard her mention fibroid. Thought I was free and clear. Got phone call on a Friday- before I said hello I figured hmmmm it's Friday no one gives bad news on a Friday. I just don't want to go in for MRI and not be prepared for more bad news. This is difficult for me as I am the one who would give anything to support anyone - not use to needing support.

Beesie

My situation was similar in that I had to have the mastectomy - my DCIS was multicentric and spread throughout my breast. Just after my diagnosis but before my surgery, calcifications were discovered in my other breast.  I had a stereotactic biopsy that showed the calcs to be completely benign and harmless.  I then had an MRI - it confirmed that my right breast was full of "stuff" (which we assumed to be more DCIS) but it showed my left breast to be completely clear.  So I decided to have a single mastectomy.  That was 6 years ago and I remain very pleased with that decision.

Certainly for the first 2-3 years it was stressful going for my MRIs and mammos every 6 months but over time that fear faded and these days I honestly don't think about it or worry about it one bit.  In fact I worry less now than I did before my diagnosis because I've been through BC and I know what it expect so it doesn't scare me in the way that it did when it was an unknown.  

What I learned with my mastectomy is that having a mastectomy, particularly with reconstruction, leads to permanent body changes.  Even 6 years later, it's still really easy to strain my pec muscle over the implant, resulting in pain and muscle aches for days. I still get frequent phantom itching.  I've learned what bras to wear with my implant reconstruction (implant reconstructed breasts are not always the same shape/configuration as natural breasts) but it still sometimes frustrates me that I can't just buy any bra that I want. I know from reading this board and from reading research studies that approx. 40% of women who have reconstruction have problems of one sort or another, often requiring additional surgeries. I also know that post-mastectomy pain syndrome is not as rare as our doctors might have us believe (since they virtually never mention it). I know that with a mastectomy, although you may regain some surface feeling on your skin, you will never regain most of the natural feeling and in some areas of your chest you may remain numb forever.  With all of that, I am grateful everyday that I had a single mastectomy only.  I would not have forgiven myself if I'd had a prophylactic mastectomy on my 'good' side and ended up with problems.  

Having said that, I am good at living with risk and uncertainty.  I have enough cancer in my family that I figure that I will get cancer again - I can't remove all the body parts necessary to completely eliminate my risk.  As for what the risk is, my oncologist told me that the risk to be diagnosed with BC for someone previously diagnosed is about double that of the average woman her age.  I was 49 at the time I was diagnosed; the average 49 year old has an 11% remaining lifetime risk (spread over 40+ years through to about age 90), so my risk was about 22% - which to me means that there was a 78% chance that I wouldn't be diagnosed again.  That was good enough for me.  Some doctors put the risk number lower while other doctors put the risk number higher. Personal and family health factors need to be considered as well.  If you aren't someone who can live with risk, then a BMX might be the best approach.  But it's trade-off and there are long-term implications to having a BMX. 

As for recovery, obviously no one has ever had both a BMX and a single mastectomy so no one can compare.  My experience with the single mastectomy was a breeze - but then I was lucky and I know that other women experience much more pain and disruption to their lives.  I was out taking walks by the 2nd day after surgery.  I did find that being restricted with movement on only one side of my body wasn't that bad - I suspect I would have found it more difficult if I'd been restricted with movement on both sides.  I do know that many women here who've had a BMX say that they are glad that they did because it's an experience that they wouldn't want to go through again.  But having had a single, I would have no problem doing it again.  So maybe that's an indication that a BMX is a much more difficult recovery.  But I'm just speculating on that.

From being on this board for some time, I've created a list of things to consider in making the lumpectomy vs mastectomy vs BMX decision.  Here is a link to a thread where I posted this list recently:  http://community.breastcancer.org/forum/68/topic/780254?page=1   In case the link doesn't work (external links always work but ones with BCO often don't), the thread is in the DCIS forum and it's called Decision Making Touture.

Hope that helps! 

Golden01

JLSAN - Please know how many are thinking of you as you make these hard decisions. When I first met with my BS, he said "You've just received news that has stopped your world". For me, his words rang true.

I  had a lumpectomy on my left breast with bad margins on 8/2 and a BMX on 9/8. My BS was clear that there was no medical indication for a BMX but it needed to be a personal decision. It was hard to know what to do but a friend, who has been through this breast cancer journey, suggested I get all my mammogram records as that had helped  her in making her decision. I did that and realized that over the past 20 years, I've  had a number of problems on both breasts (bleeding, cysts, etc.), each time the problems were found to be benign and I never thought about it again.

What helped me the most was a fact sheet from the National Cancer Institute (NCI). Here's the link: http://www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy. NCI listed six reasons a woman might consider a BMX. I had three of the six! I circled them as my husband and I went over the fact sheet together. It was an easy decision after seeing those circles so clearly on the NCI list.

We also saw an ACS Cancer Navigator that helped us talk through the options and helped us know we had left no stone unturned in making our decision.

Turns out I have a "mixed" mucinous carcinoma with DCIS on the left that hadn't shown up on mammagrams or the MRI. My pathology report showed "flat atypia" in the other breast and both the BS and MO told me that "I'd made a good decision". I already knew I'd made a good decision irregardless of what the pathology report showed! What I know is that the decision on what kind of surgery to have was a really hard one and I had to take a  little time and really consider the options so that I wouldn't second guess myself down the road.

M0m2Three

I chose to have the BMX based on my age at the time of diagnosis (43) and the grade of the cancer (3).   I really didn't want to have to deal with a 20% chance of having a new case of breast cancer on the other side.  I'm still raising 3 kids under 16 and would like to be around to see my grandkids someday.    My breast surgeon recommended an MX for the side with DCIS because getting a clear margin would mean losing at least 50% of my right breast and the nipple anyway.   A reconstruction with a matched set would be easier than trying to match the left side and run the 20% risk of dealing with breast cancer on the left side.

 All in all, like many others have said: "You have to do what feels right for you."  I made that decision after much study of DCIS and treatment and prayer.   This is your decision and you get to live with the consequences.

Janet

 BMX  - 9/2011

 DIEP - 1/25/12

Mallory107

I went with the UniMx on the rec of my BS who is of that school that you should not interfere with a healthy breast.  It is 5 weeks out from my surgery and I am strongly considering doing the other side. 

-I am becoming increasingly uncomfortable with that 22% risk to the other side.  Esp since there are calcs on that side too and it was calcs that detected my cancer in the left. 

- I ahve decided not to take tamoxifan because the risks far outweigh the beneifts for me.

-I have never been a huge fan of my breasts to be honest.  At 36C they were just big enough to get in my way and I would rather cover them than flaunt them.  They are not a huge part of my sexuality either-just not my thing.  I don't even mind my MX side even at this ealry stage.  not the prettiest thing to look at but doesn't really bother me.  I am loving how small it is in comparison and how skinny I look from that side view..  My real breast just looks huge and droopy now.  REgardless I will get that puppy reduced in time.

-My UniMX was a breeze also.  The first couple of days were tough but then it got just incrementally easier.   THe hardest thing I find to do now is the action where you have to apply pressure to steady something-like opening wine, grating cheese or sharpening a pencil.  THats when I feel the pec muscle.  Even lifting heavy grocery bags is OK though. 

-I thought at many times during my recovery how much harder the whole thing would be if both were removed at the same time.  I always had a 'good side' to use for everything from getting out of bed to drying my hair.  This is something that you should really consider if you need to be back right away.  You will most likely get back faster and easier with a UniMX.  This way you can go through the surgery and see how it goes for you also.  And then if all goes well you can do the other side.    You can then know what to expect, save some money and plan on how to make your absence go easier.

Corrie

JLZSAN,

This site is a huge help, I agree!  I think it's pretty standard to check the nodes, better safe than sorry, right?  I'm not sure of the chances it's in your lymph nodes, but I think it would be higher if it was invasive. I know this waiting game is awful. Hopefully you caught it before your lymph nodes were involved but please remeber that if it is in your lymph nodes, it is NOT a death sentence. When I first met with my plastic surgeon, he showed me before and after pictures.  In one of the pictures he told me "this woman had 22 of 25 nodes positive and that was nearly ten years ago"  she was fine.  This will most likley be a rough year but you will get through it!

Beesie

JLZSAN, if your final diagnosis turns out to be pure DCIS, then the odds of cancer being in your nodes is 0%.  The problem is that in about 20% of cases where DCIS is found in a biopsy, the surgery uncovers some invasive cancer.  The risk of this is greater if the area of DCIS is large and/or multi-focal, and if the DCIS is high grade and/or includes comedonecrosis.  If invasive cancer is found, then the nodes need to be checked.  I had just a 1mm microinvasion; my surgeon told me that even with such a tiny amount of invasive cancer, my risk of nodal involvement was 10%. I've read a bunch of studies and they all seem to confirm this number. 

The problem with removing lymph nodes is that it creates the risk of lymphedema.  This is a risk that stays with you for life, and if you develop lymphedema, the condition stays with you for life. So it's something that should be taken very seriously.  This is why the question of doing SNBs (sentinel node biopsies) for DCIS is controversial.  For someone who is having a lumpectomy for DCIS, if some invasive cancer is found during the surgery, an SNB can be done later, during a second surgery. But for someone who is having a mastectomy for DCIS, the situation is different.  An SNB requires that injections be made into the breast prior to the procedure (this is so that the sentinel node can be identified; the dye that is injected flows to the nodes and the node or nodes that are colored by the dye are the sentinel nodes - those are the ones removed); once the breast is removed, it becomes very difficult to do an SNB.  I've heard of one women who had the injections done into her arm but as a general rule, once a mastectomy is done, an SNB can't be done.  This is why SNBs are often done when women have mastectomies for DCIS.  If it turns out that some invasive cancer is found and an SNB wasn't done, then a full axillary node dissection is required. This procedure removes many more lymph nodes than an SNB and thereby creates a greater risk of lymphedema.

So it's a trade-off.  Have an SNB that might turn out to be unnecessary and creates a small risk of lymphedema, or don't have the SNB and face the risk that more extensive nodal surgery might be required later.  With high grade DCIS, usually it's recommended that the SNB be done at the time of the mastectomy.  With low to intermediate grade DCIS, it's a more difficult decision.

As for HER2 status, this is a test that may be done on your DCIS after surgery but frankly at this point it doesn't mean much.  HER2+ invasive cancer is significantly more aggressive than HER2- invasive cancer, and as a result, those who have HER2+ invasive cancer are more likely to require chemo and get Herceptin (a drug used only for HER2+ invasive cancer).  The studies done on DCIS to-date don't all show the same relationship - some show that HER2+ DCIS is more aggressive and more likely to evolve to become invasive cancer but most show no correlation between HER2 status and the likelihood that DCIS will become invasive.  A couple of studies actually suggest that HER2+ DCIS might be less aggressive.  All the studies are small so it's impossible to draw any conclusions.  And in any case, there are no treatments approved for DCIS that is HER2+. Herceptin is not approved for DCIS, although there is a limited clinical trial underway.  The net of all this is that you shouldn't worry about HER2 status if your final diagnosis is pure DCIS. 

JLZSAN

Bessie and Corrie, Thank you for the great info.

Starak

JLZSAN:  As has already been stated, there are no right or wrong answers, just which is right for you.  Some other considerations I didn't see mentioned.

How do you feel about symmetry?  For some women, keeping one breast is better than none, and is of great value to them.  For others like myself where symmetry means alot to us, I knew I would be fine with BMX but extremely unhappy with a Uni.

The next question has to be recon or no, as the answer to that question may influence your answers to other questions.

IF and that is a big IF, IF there is no recon and emotional issues aside which lets face it, can NEVER be put aside, some of us who did not recon, felt it would be easier to dress a BMX, and find a certain pleasure in being any size we want or flat on any given day as we so choose.

If you haven't already visited the website, Breastfree.org, it has alot of information, women's stories who have been through it with both BMX or UMX and has pictures.

The part I would like to dare I say advise you is to find some center peaceful place in your soul to make these decisions and then stand up for yourself.  I hate it when anyone tries to drag someone down a road they don't want to go.  The only right answer here is the right one for you and only you can decide that.

From just the recovery standpoint.  I had a BMX and cannot imagine that a UNI would have been appreciably different in the long run.   

Barbara

Starak

Just to show once again how we are all so very different. My biggest issues, huge hematoma, ongoing nerve damage, etc. were all on the proph side and yet even now with 20/20 hindsight, I would not for even a mili-second want to go back and make a different decision.