Surgery options for Stage III, Grade II IDC

SATEX12

Hello BC Sisters,

Like many ladies, I have visited the discussion boards since the early days of waiting for biopsy results and have finally decided to post in the hopes of getting some feedback on my particular situation.

After my sister was diagnosed with IDC, stage I, at the age of 51 in August of 2009, I was also diagnosed with IDC, Stage IIIA, in early November 2009 at the age of 48. My aunt on my mother's side also had IDC and unfortunately passed away a few years ago from secondary lung cancer at the age of 67.

In November 2009, I had a core needle biopsy of a left breast mass and axillary lymph node. They both tested positive for IDC. I am stage IIIA, tumor in both my left breast and lymph nodes are grade II. Mammograms and ultrasounds on both breasts have multiple hypoechoic areas all under 1cm ( the tumor in my left breast according to the ultrasounds was approximately 3.5 cm) however, I have a permanent cardiac pacemaker and therefore am unable to have breast MRI to further investigate if these "other" hypoechoic areas are potentially precancerous, or, God forbid, cancerous. I also have extremely dense breast tissue in both breasts which we all know complicates early detection of BC...

So, my breast surgeon, Oncologist and Radiologist discussed my case thoroughly at the time of diagnosis and recommended neoadjuvant chemotherapy so we could monitor not just chemotherapy response on the known malignancies, but also if any of the other hypoechoic areas were responding by use of mammograms and ultrasounds after my first four treatments of DD A/C instead of doing lumpectomy and axillary node dissection prior to chemotherapy.

The plan was a good solution because it should make surgery options clearer once chemotherapy is completed and further mammograms and ultrasounds have been assessed. I have completed the four DD A/C and as of today, also ten of twelve weekly Taxol treatments. We( my Oncologist) myself and my family are now beginning to consider surgery options for mid to late June 2010.

My Oncologist is suggesting that she would recommend breast conserving surgery ( probably quadrantectomy) on the affected breast and five weeks of rads ( axillary lymph node dissection is unavoidable), providing the breast tumor has decreased substantially ( it was reduced to approx 2.8 cm after four DD A/C treatments) and there are no other changes in any of the other hypoechoic areas. She used the studies we've all heard about which suggest no benefit in mastectomy so long as breast conserving surgery is followed up with rads, to support her recommendation...

Initially, after reading the studies that say breast conserving surgery and mastectomy have almost the same percentage of recurrence, although mastectomy DOES reduce the percentage slightly, I was leaning in the direction of my Oncologist's recommendation. Now, after a long five months in chemo and all the side effects, as well as listening to my husband and kids concerns of recurrence, higher risk of new cancer in unaffected breast and the huge disadvantage of not being a candidate for MRI until new MRI technology is available for implanted cardiac pacemaker patients, I am leaning heavily towards BMX.

I think that when I discuss further with my Oncologist, she will push back, but the fear of recurrence or a new cancer is so real for me and my family and knowing that without the benefit of MRI, which is especially beneficial for those of us with extremely dense breast tissue, a new or recurrence could easily be missed with mammogram or ultrasound, makes me want to push for BMX. Then there is the reality of having to go through chemo again should cancer return, which I hope I will never have to endure again and still ending up with mastectomy... These factors, to me and my family, make it seem more sensible to be aggressive with the surgery options than just keeping our fingers crossed that mammograms and ultrasounds will pick up anything in the early stage if we go the breast conserving route. 

I know so many of you have struggled with this decision and I'd like to know if you think it's reasonable to expect that given my disadvantages of having very dense breast tissue and not being able to use MRI because of my pacemaker, my Oncologist should support me in asking for BMX.. I know my family would feel more comfortable with this decision and frankly, it would be incredibly hard on me to look in their eyes and see pure fear again should cancer return. Just like your families, my cancer diagnosis has been very hard on them and I think given there are no guarantees for any of us that cancer will not return, it seems to me that if I go the BMX route, then I will have done all I can do to prevent recurrence in my affected breast or new cancer in what we think ( but do not know for sure) is a healthy right breast. If cancer returns after those measures, then so be it.

I would really, really appreciate any insight or comments that you might have. I have taken great comfort already in reading many posts on the discussion boards have gained much knowledge.

Thanks

2z54

Hi!

Since no one else has come along, I'll jump in and get this started.  First, I'm terribly sorry that you're here, but... you have come to the right place!  I'm sure other women will be around soon to lend their insights, experiences and best wishes.  

That said, I had IDC as well, in both breasts.  I had bmx in Jan. '09 and never looked back or regretted it. Your letter sounds like you are very concerned about your oncologist's opinion???  You have to come to the best decision you can for you (and with very dense breasts and an inability to use MRI, it seems like bmx is the obvious winner!) and then find a team of doctors (oncologist and surgeons) who will support you and help you through it.

It seems to me that you know what you need to do.  You may consider whether or not to have reconstruction, too.  I did, and never regretted it!!  If you do want reconstruction, you'll have many other choices to make and you'll need to speak with a few plastic surgeons.  I was very lucky that my oncologist, breast surgeon and plastic surgeon all worked together before, so it very much felt like a team of doctors helping me through.

Wishing you the best of luck on the journey!  Please let us know what you decide to do!

Sue

precioustime

Hello Cannoma,

A decision to keep or get rid or your breasts can be a difficult one.  I too had neoadjudvant Chemo- this was due to the fact that after mammograms, MRI and 6 biopsies (due to the fact that I also had very dense breast) they found 3 tumors in my rt. breast as well as rt. axilla and mediastinal lymph node positive.  I went ahead and did 6 rounds of TAC and was greatful to have done it first to have given me the opportunity to think about my decision on having unilateral or bilateral mastectomy. 

In December of 2009, I decided on bilateral mastectomy without reconstruction.  It's been 4 months now and I am so glad that I chose the BMX.  This decision has given me a peace of mind to know that there will be no more mammograms and a high possibility of no more surgeries.  I have had to learn and get use to the new me without breasts- such as wearing stylish clothes because I go without wearing a prosthesis-- and sleeping at night because I use to sleep on my stomach at times and now 4 months post surgery, I am just getting use to giving my husband a hug because of feeling sensitive in the chest area and I guess just being protective of myself.  

You probably have made up your mind what is best for you BUT just want to be reassured that you are making the right decision.  Go with your feelings and not others opinions.

Wishing you a speedy recovery from surgery and a cancer free life!

Loretta

SATEX12

Hi Sue,

Thanks so much for your response! Yes, you're right I think I am mentally there as far as my decision ( my family has been there for some time!) but I would still like to present this to my Oncologist in a manner that she clearly understands why I am going against the popular trend for surgery options in young women, her buy off is important to me because we have become close and she is indeed an excellent Oncologist! I wouldn't have made it this far without her excellent care...

I truly think that when she considers my "entire" case, particularly with the disadvantages my pacemaker presents and family history, she will agree that this path is reasonable for my case.

I am indeed looking to reconstruct, never considered not doing so, in fact I'd like immediate reconstruction, just a little concerned what those immediate reconstruction options are since rads for five weeks is probably necessary. Would love to hear others experience on that topic...I am VERY fortunate to live in the same city( San Antonio, Tx) as probably the countries finest plastic and reconstructive microsurgeons practice, they specialize in breast cancer reconstruction and I have made an appointment with them for early June to discuss all options. They specialize in DIEP, performing something like 500 procedures a year with just amazing results, however, I don't know if we can do that with immediate reconstruction due to rads and also if I am candidate due to prior C-Section surgeries, but I will find that out in June..I am looking for an option that allows for basically one "major" surgery, even if it's just TE's. Less down time and less time away from work is what I am hoping for...

Thanks again Sue, your insight is exactly why I posted last night. I know it's time now to get re-enforcements from my sisters in the field .

 Have a great weekend!

2z54

Hi again Cannoma,

I can see that you have already put a lot of thought and research into your decision. I had the DIEP immediate recon with my bmx.  And, although it was an 11 hour surgery and some of my family was concerned about that (the amount of time in surgery going in).... it all worked out great and I'm thrilled with the result. I don't think I would change a thing!  

I was 54 when I had the DIEP, and overweight, although not quite obese.  (I've since lost 25 lbs and feel great!!!).  I had had an ovary removed in my mid 30s and had a vertical incision so I wasn't sure I'd be a candidate for DIEP - but I was, and it worked.  So, it's very possible that your c-section surgeries won't be a detterant.   Also, I'm not sure if you'll be needing radiation if you elect to have the bmx.  If the radiation is for the axilla area, it might not interfere with a DIEP at all.  Of course, the plastic surgeons you speak with will be able to answer all those questions.

In terms of down time, I had a wound healing issue (prior smoker) that caused me to extend my post-surgery leave time from 2 months to 3 months.  I did dose dense chemo prior to surgery and was able to work from home through all of that. 

In terms of your onc; it's good to have a good relationship with your onc.  I just saw mine yesterday, and enjoyed the visit.  (She was glad I lost weight, but hadn't told me that I needed to!)   When I was diagnosed I had 2 primary cancers; a very agressive triple negative in my left breast and a very tiny < 1 cm estrogen positive in my right breast.  I was very lucky that the radiologist found the lump in the right breast when she did, or I may not have not have elected the bmx - which was clearly the right decision for me.  And still, with a lump in each breast my oncologist and breast surgeon still thought lumpectomies in each were reasonable.  I think, however, that after I elected to have the bmx, they were both relieved.  In fact, they both told me later on that they would have made the same decision in my situation.

I'm sure your onc will be supportive of whatever decision you make.  She probably wants to be sure that it's your decision!   Take care and let us know what you decide!!

Sue

ps... feel free to PM me about DIEP procedure if you have questions...

SATEX12

Thank you Sue! All great info, especially with regard to you DIEP reconstruction. I have not yet met with my Radiation Onc; thought it best to make surgery decision so she would have proper information to recommend if rads to breast area or just underarm would do the trick. I think that if we go with BMX, she may avoid rads to the chest area to help protect my implanted pacemaker ( cancer and pacemaker are on the same side) so long as there is not a great risk in doing so.

Appreciate your time and support!