Am I being too aggressive in treatment?

ChattaChick and Basia-

ladies I know how scary and stressful this time is.  I remember all too well immediately post diagnosis I was begging to "just get them off me."  That being said, please please please take some time to gather more data and consider your options.  A double mastectomy is irreversible and the changes that you will experience, both emotionally and physically cannot be comprehended until after the procedure has been done.  

I don't think there is anyone on these boards who would say that their breasts are more important than their life but please don't jump into any permanent decisions without really understanding where things are at for each of you.  ChattaChick, at a minimum please get a 2nd opinion from a National Cancer Institute (NCI) affiliated pathologist

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html 

as there have been many instances of ADH (a precancerous condition) being mistaken for DCIS (pre-invasive cancer) even recently on these boards and from your post your DCIS is very low grade which is a positive thing!  If you scroll down this thread for instance you can find some links to a recent New York Times article that deals with this same issue.

Basia, I still recommend a 2nd opinion for you as well with another breast surgeon - it seems out of the usual experience to recommend a BMX for a large mass in one breast that hasn't been extensively biopsied or had an excisional biopsy unless there is another factor at play such as BRCA 1 or 2 positivity or an extensive family history (I was 35 with extensive DCIS 8+cm and a somewhat strong family history and my BS still thought a single MX was enough.)

It is a highly personal decision to do a BMX and I would not criticize anyone who chose either way (I had a BMX myself a few weeks after turning 35) but you should know it doesn't cut your risk of recurrence with DCIS to 0% - more like 1-2%.  And usually no further screening is recommended so that is kind of scary. And you have to be prepared to have complications with the prophylactic side (I developed an 8x4 inch area of skin envelope necrosis on my prophy side so now I have to have multiple revision surgeries).

After a BMX you should know you will have little to no sensation in the breasts.  Sexual sensation is gone completely for me.  For me the numbness extends up to my collar bones, in my armpits, behind my upper arms and even to my shoulderblades.  After my right sided sentinal node biopsy I do have very mild right lymphedema that means I have to be very careful of any injuries or paper cuts even to my right hand/arm.

This is not to say that I regret my decision, however I miss my breasts every single day and I do regret having to be in the position to choose mastectomy.  My breasts gave me pleasure, fed my babies and were a part of me that will never come back no matter how "normal" I look in clothes.  Reconstruction is great but it will never be the same as what was removed.

With DCIS you have some time to be sure what you are dealing with, to do research and to get informed and get a second opinion.   There is no rush, don't let anyone push you into anything.  If your gut is telling you to slow down, listen to it as once a mastectomy is done it can't be undone and a few weeks delay won't make a difference if you ultimately decide to go with BMX. I also highly recommend getting a medical oncologist's opinion as well as a breast surgeon's opinion.  Knowledge is power!  Take care...

I feel that you need to do whatever will give you peace of mind. I too had DCIS and had BMX (two different surgeries). Part of my decision process was knowing that it was grade 3, comedo, multi focal, multi quadrant, etc. My research showed that in all likelyhood, my cancer was going to end up being er/pr negative. My lumpectomy came back confirming my fear. I decided I dodged a bullet and thought I'd rather have a mastectomy than go through this again. My first mastectomy (on cancer side), showed all of the cancer was removed during the lumpectomy but ADH and LDH was found throughout the breast. Decided I didn't want to wait until cancer was found in my healthy breast and went ahead with a prophylactic mastectomy. No cancer was found but ADH was present. Do I regret my decision? Not for one single second. I decided to be proactive instead of being reactive and am celebrating my first cancerversary on August 10. I don't think I would have ever been convinced that more cancer wasn't lurking had I not gone ahead with the BMX. Everyone is different and this is just my own personal experience. Good luck with your decision.

I DONT KNOW IF THIS WOULD BE THE RIGHT FORUM TO ASK THIS QUESTION BUT WHEN I WAS DIAGNOSED I WAS NOT GIVEN A STAGE OR ANYTHING UNTIL AFTER THE SURGERY BECAUSE THEY NEED TO LOOK FOR NODE INVOLVEMENT.  THERE ARE PEOPPLE WHOM HAVE NOT HAD SURGERY YET BUT HAVE A STAGE, IS THIS JUST A GUESS???? MY DRS WOULD NOT STAGE UNTIL AFTER SURGERY.. I WONDER ABOUT THIS BECAUSE IF ANYONE ENDS UP HAVING NODE INVOLVEMENT IT WOULD CHANGE THEIR STAGE QUITE A BIT... ANY THOUGHT ON THIS??

OH AND CHATA CHICK... I WOULD SAY, BE HAPPY WITH YOUR DECESION... I WOULD HAVE HAD BOTH REMOVED IF NEEDED.... I AM SO HAPPY WITH MY CHOICE TO HAVE MAST AS APPOSED TO LUMP... MOST PEOPLE SAY THAT LUMP IS JUST AS EFFECTIVE BUT I PERSONALLY FEEL THAT THERE IS WAY MORE SELF REASSURANCE WITH A MAST... YES, MORE RECOVERY AND ADDITIONAL SURGEY BUT I READ ABOUT SO MUCH REOCCURANCE WITH THE LUMPECTOMY

GL WITH YOUR JOURNEY TOWARDS SURVIVORSHIP..... ((HUGGS)))!!! 

Everyone is entitled to their opinion, but at least for me, what you are thinking is not what I would/did choose. So, yes, again for me personally, I do think you are being too aggressive.

I'm so thankful to have been given the option to have a lumpectomy because I did have a sizable amount of DCIS, and even with wide margins, my breast still looks good and I have full sensation. Mastectomy is amputation, and I just wasn't ready for that, plus I'd also have to endure reconstruction. I did think about "just removing them both" when first diagnosed, but thankfully with a little time, reading, and knowledge I removed the emotion/fear and made the absolutely right decision for me.

Scattered micro-calcs. are fine, in fact I still have a few in each breast, but every single dr. has assured me that these are fine. It is a sign of normal aging in many of us. But clustered micro-calcs often are a sign of DCIS or worse.

Yesterday had my 6 month mammograms (first since completing surgeries and rads) and I'm happy every single day that I have both breasts.

I can't tell you if a bilateral mastectomy would be too aggressive a treatment for you.  What I can tell you is that for me, yes, it would be.  I had extensive high grade DCIS along with a microinvasion of IDC; because there was so much DCIS, I had no choice but to have a mastectomy.  But I choose to have a single mastectomy only.  And if I'd had a choice, I would have had a lumpectomy with radiation rather than a mastectomy. 

What I suspected then, and what I know now, is that having a mastectomy is not as simple as removing your breasts and building replacement breasts. Your body is affected by having a mastectomy and you can't know what the reaction of your body will be, whether it will be an easy transition or a difficult one, both over the short-term (with the surgery and reconstruction) and over the long-term (with the possibility of long term discomfort).  Additionally, until you go through a mastectomy, and in fact until you live with it for 6 months or a year or even several years, you can't know what your emotional reaction will be. 

Having said that, what's most important to understand is that we each look at this differently.  So how I feel - or in fact how anyone else here feels - really doesn't matter.  What matters only is how you feel.  Recently I posted this list of questions/considerations for someone else diagnosed with very early stage BC who was making the same Lumpectomy vs. Mastectomy vs. Bilateral Mastectomy that you are making.  This is a good starter list of things to consider:

• Do you want to avoid radiation? For those who have a small amount of cancer that isn't near the chest wall, usually it's possible to avoid radiation if you have a mastectomy.  You should be aware however that there is no guarantee that radiation won't be necessary if you have a mastectomy, if some cancer cells do happen to be found near the chest wall. 
• Do you want to avoid hormone therapy? Being ER/PR+, you will be prescribed Tamoxifen if you have a lumpectomy; additionally, you may be prescribed Tamoxifen if you have a single mastectomy (although it will certainly be optional). Tamoxifen will not be necessary after a bilateral mastectomy (assuming that no invasive cancer is found during your final surgery, or no more than a microinvasion).
• How do you feel about going through a longer surgery and recovery period? Reconstruction, even "immediate" reconstruction, is a very long process - many months.  Some women have little discomfort but other women find the process to be very difficult - there is no way to know until you are doing it. Are you prepared for that?
• How you do feel about your body image and how will this be affected by a bilateral mastectomy? Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural, particularly if you have implant reconstruction. You may have lingering side effects (muscle pain or spasms, etc.) on one side or both. Will this bother you? If you have a bilateral mastectomy and you have complications with reconstruction, how will you feel? Or if you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have reconstruction on both sides at the same time), will you regret the decision to remove your breasts?
• How do you feel about losing all the natural feeling in your breasts and your nipple? Are your nipples important to you sexually?  Remember that if you have a bilateral, this will change your body for the rest of your life.  Are you prepared for that?
• How will you deal emotionally with the loss of your breasts? Will you be glad that they are gone because they were the source of your cancer and your worry, or might you be angry that cancer forced you to lose your breasts?   Don't just consider how you feel now, as you are face the fear of a breast cancer diagnosis, but try to think about how you will feel in a few years, once this diagnosis is well behind you.  A lot of women don't really feel the loss of their breasts until quite some time has passed. Also consider how you will feel about the loss of your breasts if you should encounter problems with reconstruction or if you aren't satisfied with the reconstruction results.
• Will removal of your breasts help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breasts are gone? Or will the loss of your breasts be a constant reminder that you had breast cancer?
• Do you know your recurrence risk if you stick with just a lumpectomy and radiation?  Is this risk level one that you can live with or one that scares you?  How would you deal emotionally with this risk level?  Will you live in constant fear or will you be satisfied that you've reduced your risk sufficiently and not worry about it (except when you have your 6 mth or annual screenings)?
• Do you know your risk to get BC in your other (the non-cancer) breast?  Is this a risk level that scares you and that you just can't live with?  Is that what is driving your thoughts to have a bilateral?
• How will you feel if you have a lumpectomy and get BC again, either a recurrence in the same breast or a new BC in your other breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you know that you made the best decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and only a tiny amount of cancer is found in your affected breast and no cancer or any abnormalities are found in your other breast?  Will you question (either immediately or years in the future) why you made the decision to remove your breasts? Or will you be satisfied that you made the best decision with the information you had?

Thinking about how you would answer these questions might have clarify your decision, one way or the other. Good luck to you!

I had DCIS in only one breast - could have gone BiMX, but I didnt want to take off healthy tissue - seemed way too agressive for me.  Knowing I went thru it once, I could do it again if I have to.  But, I am not going down that road until I have to. If ever. 

ChattaChick, I hope you are reaching some peace with your decisions.  I had DCIS in 1996, the year I turned 50, with a lumpectomy & re-excision for clear margins; a stage 0.  My scars are nearly invisible (my bs followed stretch marks).  We watched and did regular mammograms (decreasing in frequency), and had regular checkups.  No recurrences, and no problems. At that time I did not do rads, or Tamox, and was pre-menopausal.

What I now have is a new primary, but "regular checkups" caught it really early, IDC <1cm, 0/2 nodes, Stage 1b, and I have opted for another lumpectomy + radiation, and now AIs are in my future; my prognosis is good but of course I'm nervous.  Still, I was comfortable with both decisions, and DH has supported me.  When I suggested to my bs this time "if it's best to just cut em off, let's do that."  She reassured me that the survival for MX and lumpectomy + rads were almost identical for my current DX and highly recommended BCT and at least trying the AIs for my situation this time. I trust her - she's the same surgeon as 1996. 

Now, I'm small-breasted enough that another lumpectomy might qualify me for reconstruction, but it's what made sense for me - I still have options, and both breasts.  Many thoughtful women have offered up their experiences for you to ponder as you weigh your decision, you'll make the one that's right for you.  Being able to choose treatment makes this disease difficult, yet there's a blessing in having the choice tailored to your specific situation.  Good luck in your future and Be Well.

Hi Chattachick

I am sorry you have to make this decision. It is a tough one, and so personal.

 I recently had to make the same decision.  DCIS stage 0, grade 2...I was diagnosed after my first mammogram and subsequent biopsy, followed by MRI, at age 41. I have 4 young kids, ages 11, 9,7,5. I lost my mother to uterine cancer at age 42.  Her untimely death and my life without her has lead me to be very conservative and aggressive in my own health decisions.

The stress of MRI/Mammo's every 6 months combined with my innate anxiety and life experience would have been too much for me to bear.   I will not let history repeat itself  for my family without a serious fight.  Cancer SUCKS.  After consulting with 2 BS and 2 PS in the Boston area, it was easy for me to make my decision...BMX with immediate recon.  I feel like my breasts served a purpose in life by BFing my 4 babies.   My health and my desire to be here for my kids for as long as possible outweighted my need for breasts.   I know I still have a 1-3% chance this could come back, but for me, that beats the lumpectomy, radiation, tamoxifin (which I can't take anyway) route.   If it does come back, I will know I did everything in my power to prevent that.    These factors helped lead me to my decision, and I have such a sense of peace with it, I know I did what was right for me.  I really don't think there is any such thing as being too aggressive-it is so personal and an individual decision.  Some of us by nature are more conservative than others, and our mindset can mold our decision.

I will say that upon getting final pathology after my BMX, I was even more satisfied with my decision.  There were 2 spots of DCIS, one .2cm and another hidden spot of .4cm.  These were found on non-consec slides and throughout the Mammo, MRI and ultrasound process, and with two stereo biopsies.  Going into this surgery, only one area was identified so had I gone the lumpectomy route, I most likely would have either had dirty margins or would have had another DCIS (or worse) diagnosis in the near future.  My pathology also showed a radial scar on one side which can be a precancer.  My intuition tells me my breasts were going to be toxic and that I dodged a bullet.

 I hope that you find peace and comfort with the decision you make.  My recovery so far has been much easier than I expected.  I don't regret my decision, I only regret that DCIS entered my life.

Good luck and God Bless,

Mags