Second Guessing my Decision for Lumpectomy

NSJ2

I have been reading so much on BC since I've been diagnosed, and I really thought I was certain on my decision for a lumpectomy, radiation & hormone therapy. My biopsy shows I have DCIS 6mm, grade 1, stage 0.

After reading here and some more articles, I'm starting to second guess my decision and worried I should go with a bilat Mx. My risks are that I have a family history (mother who is a survivor and possible great aunt who may have died because of BC where she refused any treatment), I also have dense breasts (scattered fibroglandular densities) and I am older (age 57).

I know after I do the lumpectomy that I can't just up and ask for a Mx as insurance won't cover it unless there is another diagnosis. A recurrence in either breast scares the hell out of me. And after reading here, I'm not sure I can trust Mammos or MRIs to find cancers in my breasts regardless if I'm diligent and frequent in having them.

Gawd, all of this is so hard and tearing at me.

LAstar

I made myself miserable trying to decide between the two, but ultimately the decision was made for me after 2 lumpectomies with involved margins.  I am happier with my low probability of recurrence now that I have recovered from the big surgery, but I honestly could not have chosen to have a mastectomy unless I absolutely had to!  Beesie has a great post somewhere about choosing between the two and things to consider.  For example, if you had a BMX and found only a small amount of DCIS that could have been taken with LX, would you regret it?  For low-grade DCIS of only 6mm, radiation may not even be necessary.  The bottom line is that it is your body and only you will know what will give you peace.  Research this as much as you can, then listen to the little voice inside.

Janet456

I really feel for you.  Due to circumstances leading up to my diagnosis my only decision was whether to go for rads or not after the event - that was hard enough!

Think it through carefully, ask all the questions, take all the advice, then don't look back.

I wish you well xx 

NSJ2

Thank you for the response LAStar. My little voice inside has competing thoughts. 

BTW: What is a gap flap?

NSJ2

And oh, does taking Tamoxifen (or a hormone inhibitor equivalent) help prevent cancer on the other breast (the breast that didn't have cancer)?

LAstar

Yes, the role of Tamoxifen is to protect the other breast.  Since I had BMX, I will not need it myself.

A GAP flap is a free-flap reconstruction procedure.  The donor tissue and blood vessels were taken from my hips/high on my bottom and connected to vessels inside my chest. I'm 3 months out and my breasts feel really natural for the most part.  In 2 weeks, I will have the Stage 2 surgery where my donor site is repaired (bottom lift, lipo), my breasts are sized and contoured, and nipples are reconstructed if I choose.  It was one heckuva recovery (~ 5 weeks) but I'm very happy with the results so far.  They are warm and soft.  I went to the Center for Restorative Breast Surgery in New Orleans.  Check out their result photos -- amazing!  Fortunately, my insurance company is covering almost everything. 

www.breastcenter.com

Honestly, I was horrified when I first read about these reconstruction techniques.  But, as usual, cancer provides us with a lot of tough choices and this seemed like the best approach for the long-term.  A woman in my hometown had the same procedure done there 2 years ago and I was blown away at how great she looked after BMX.  

Beesie

Okay, some honesty and tough love here.  

NSJ2, I think what's happened here is that you've been very active on this board ever since you were diagnosed.  You've immersed yourself in the world of breast cancer. You've been reading about all sorts of situations that have happened to other women and you've been worrying that any or all of these things might happen to you too. 

It is good to be aware of the risks.  It is good to be prepared and educated.  But you have to have perspective.  Your diagnosis - what appears to be 6mm of grade 1 DCIS in someone who is 57 (and I assume, post-menopausal) - is different from 95%+ of the other diagnoses here.  Of course anything can happen, but the risks that something will change or go wrong in your situation are extremely low.   

Within the medical professional these days there is a lot of debate about whether or not DCIS should be considered breast cancer, or whether it should be reclassified as a pre-cancer.  Personally I find those discussions to be irresponsible. DCIS is a heterogeneous disease, with lots of different types of diagnoses, some that are very low risk and some that are very high risk.  The statements that we've been seeing in the media, things like "DCIS is being over-diagnosed" and "DCIS is being over-treated" and even "DCIS does not need to be surgically removed" are being interpreted by many women as applying to all diagnoses of DCIS, and that can be very dangerous.  Recently we've seen a number of women come to this board convinced that they didn't need any treatment (even surgery, in a couple of cases) for their DCIS.  Yet most of these women had what would be considered to be higher risk cases of DCIS - grade 3, comedonecrosis, larger amounts of DCIS, more than a single focus of DCIS....

NSJ2, you have what appears to be a low risk case of DCIS.  When the medical profession talks about the over-treatment of DCIS, they are talking about cases like yours.  When the medical profession talks about redefining DCIS to a pre-cancer status, they are thinking about cases like yours.   

I'm not saying any of this to suggest that your DCIS isn't breast cancer or that you don't need treatment. Personally I think the idea of "watchful waiting" without any surgery is ridiculous because we currently don't have any screening or diagnostic tools (other than surgery) that can confirm what's really in there.  Is your diagnosis really just 6mm of grade 1 DCIS?  Until you have your surgery, you can't know that for sure. But it probably is. So what I'm trying to do is provide some perspective on this diagnosis. 

I also would like to provide some perspective on your risk: 

You say that, "after reading here, I'm not sure I can trust mammos or MRIs".  But your mammo and MRI found 6mm of grade 1 DCIS, didn't it?  That's pretty good and that suggests that mammos are quite effective for you.  

You say "I also have dense breasts (fibroglandular densities)". 'Fibroglandular densities' is the description of the second lowest category of density.  It means that you don't have particularly dense breasts!

You say "I am older (age 57)".  That's good!  It's women who are diagnosed younger and pre-menopausally who are at greatest risk. 

The one possible catch is your family history.  Was your mother also diagnosed post-menopausally?  Genetically inherited breast cancer tends to develop and be diagnosed at a younger age; if both you and your mother were diagnosed post-menopausally, then it's not likely that there is a genetic mutation that's causing the breast cancer.  Still, it would be wise to talk to a genetic counsellor.  Certainly if you have the BRCA mutuation, that would move you into a completely different risk category.  

Maybe a BMX is the right decision for you.  But if you are going to consider this, please consider it in the context of your diagnosis and your risks, not in the context of what's happened to other women on this board or the decisions made by other women on this board who have completely different diagnoses and completely different risk profiles than you do.

Edited for typos only. 

NSJ2

Beesie, et all:

Thank you for the responses.  I have a doc appt I need to run to, but will respond in kind when I return.

And Beesie:  Yeap, my mom was diagnosed with IDC 3mm at age 74 and was post-menopausal. Although she had a full hysterectomy at age 33. So her menopause was surgery induced.  She also took HRT for 41 years!  She is now 82, has regular mammos and is breast cancer free.

And I have been post-menopausal since 45/46-ish (now 57). Never took any HRTs.

NSJ2

cinchgirl

I had a terrible time trying to decide between a MX or simple lumpectomy.  Let me first tell you how I was diagnosed with this "non-cancer-cancer".  I had gone in for an annual mammogram and got a call back for a repeat on some suspicious calcifications.  When I returned for the extra views, the radiologist wanted an ultrasound done at that time.  The ultrasound showed a 4mm mass.  The radiologist put his hand on my leg (his sympathetic gesture) and said "you have cancer".  There I was all alone, bare breasted, out of town and scared to death.  WHAT??? I was so terribly shocked that I could hardly think.  I charged right up to my faithful surgeon and friend for help.  He was not in but his staff calmed me down and made me an appointment for the next day.  My appointment with my surgeon went much better and he reassured me that either way, malignant or benign, we will deal with it.  Got the surgery set up for a lumpectomy/biopsy and of course that dad-burn radiologist was right, it was DCIS. I had to have another lumpectomy a few weeks later to get clear/wide margins and there was a LOT of tissue removed.  My breast were very obviously uneven following the 2nd lumpectomy.  Then the radiation treatments made me even more lop-sided.  I wasn't sure what to do at this point. I felt as though I was on some sort of breast cancer  assembly line.  I went to see a plastic surgeon about my options at this point and she recommended to have a lift and reduction to match everything up. She did a HORRIBLE job, which can be fixed with a simple proceedure if need be.  Before the breast reduction, I had a mammogram that came back birads 3 and my doctor was not that concerned.  Then I had another one 6 months later and it was birads 3.  Now, I am due to have another mammogram in November.  My surgeon has suggested that if it is birads 3 again we might do another biopsy. Ok, I'm good with that but these boobs have been roughed up enough already.  Just waiting and watching and waiting and watching.  Makes it so difficult to move on with your life. At least it is for me. 

  Now,  whether or not to consider a Masectomy or lumpectomy is a very personal decision and can only be made by the individual that is going to have to live with it.  I made the mistake of listening to too many folks and not listening to myself! I regret not going forward and having a bilateral MX w/reconstruction from the beginning.  Be faithful to yourself first and foremost, all others secondary. 

I hope that whatever you decide to do that it will turn out to be the best thing for you and makes your journey easier.  My heart and prayers will be with you. 

Catherine

It's a very personal decision.  I had a lumpectomy for DCIS nine years ago.  My aunt also had DCIS and had a double mastectomy.  I was thrilled to be able to get by with just the lumpectomy, but everyone decides based on their own criterion.  I have been fine since then.