Topic: how to decide what to do: experience/insights?

Mar 7, 2012 02:07 PM, edited Mar 7, 2012 02:08 PM by AlieSF

Okay, apologies. It was my first time posting and something crazy happened with the coding. I am going to type this in manually (instead of cut/paste).

I'm in a difficult, decision making place. I've met with my doctors (some of them multiple times) and done quite a bit of research but what I really need at this point is to hear the insights and experiences of people who have been where I am now, so I can incorporate this wisdom into my decision making process Please, if you are able to answer my questions (at the bottom) I would be so thankful to hear what you have to say.

 Here's my info: Last July I went in for my first mammogram. A week or two later, I was called back b/c they were having difficulty reading th eimage. I assumed that meant it was poor image quality, but it was b/c my breasts are really "busy" meanig, lots of clutter and density. We got a better picture, and a few weeks after I was brought in for a sonogram guided biopsy. The biopsy turned up papilloma, and so in very early October I went in for an excision. This first excision turned up not a papilloma, but dcis, with inadequate margins. In early December, I went in for my second excision; this second surgery turned up multi-focal dcis, also with inadequate margins.Follwoing that second surgery, I met with all kinds of doctors to discuss my options and I decided to get another lumpectomy and to do a bilateral lift/reduction to give me some symmetry. I then planned to do radiation. Well, my third surgery went well and I am healing beautifully. Unfortunately, my pathology has now come back as positive for invasive (Stage1) cancer.

To sum up: Six months. Three surgeries and a biopsy and each time we find more than we expected. Disturbingly, the invasive cancer turned up on one of my margins that we'd thought was good enough- it was not on the side that was considred inadequate.

I need to decide now to proceed. Another lumpectomy with radiation? Mastectomy with reconstruction, either spacer for future implant, possibly a smaller implant, or a tram flap? Do I go for maximum peace of mind and get a bi-lateral mastectomy with spacers or smaller implants? I have a good list of pros/cons/considerations for each, but if you have made this kind of choice, I would really love to know and would appreaciate you sharing your thoughts/insights, re:

1. What did you choose, and why? Are you happy with the results?

2. Is there anything you know now that you wish you'd known then; is there anything you'd do differently?

Thank you, in advance, for any help you can offer.

Cheers,

Alie 

Mar 7, 2012 08:38 PM Scuba_duchess wrote:

Alie, it's a tough call. A couple of questions. Have you had genetic testing (BRCA1 / 2) and have you gotten your Oncotype DX score. The oncologist ordered that one. The onco score helps look at likelihood of recurrence.... These are both good data points for working through this.

I got diagnosed in May, lumpectomy July but 4 of 6 margins were not clean. They took a decent chunk out. I struggled with the decision, but given my family history with BC, my sister was also diagnosed in her mid-forties, I opted for bilateral mastectomy with Latisssimus Dorsi recon. In my case it was the right call as when the biopsyed the good breast, they found DCIS. Either way, whatever call you make is the right one. Here are some thoughts, feel free to PM me if you want any insights, happy to share...

1. I lost ALL feeling when I had the BMx, it's been 7 months, doubt it's coming back. I miss that terribly, it's been a major adjustment for me and DH.
2. The TE's sucked, but they served their purpose.
3. Ask to see pictures from PS so you have reasonable expectations of what you would look like with each surgical option.
4. Make the decision for the long term, not just about the right now. No matter what path you go down, you will get through it!

Try and remember to breath. I wish you well.

Cheers, Lisa

Mar 8, 2012 07:32 AM teddybear71 wrote:

For me the decison to have BMX with DIEP reconstruction was an easy decision. I am only 40 years old and I have 2 kids at home who still need me for years to come. I decided to do the BMX due to family history of BC. My mom is a BC surviovor, my Grandmother died of BC and my Great Aunt also had BC. I did not want to keep worrying that it would come back on the right side which so far was cancer free. I am still new to all of this too. I just had my BMX with DIEP on 2/17 and am currently at home recovering. I am also waiting on my ONCO DX to determine if Chemo will be needed for me. My head still feels like it is spinning but this web site has been a godsend and is full of such amazing women and information.

May 22, 2012 07:51 PM Maya847 wrote:

Alie I would definitely request the oncodx test.  I originally had a lumpectomy.  Stage 1 but grade 3.  Chemo was rec due to the high grade.  Originally the course of chemo I was going to get was not as aggressive as what we ended up using, once my onco  score was received.  (I was 45).  I started my chemo with the plan to follow with radiation as I was not having the mastectomy.   I have no sisters and my mom passed away at a young age, but not from cancer.  I pushed for the BRCA test and learned I was BRCA2 +.  This then changed the treatment plan again.  Radiation was cancelled and this past March I had a double mastectomy with reconstruction.  I was suppose to have the diep flap, however ended up with the TRAM.  I am 8 weeks post op today.  I remember being asked by one of the doctors at Mayo if they prepared me well for what to expect as far as pain.  They did.  What I think they failed to prepare me for were all the possible complications.  I know they skimmed over things and perhaps I did not ask enough questions when it came to this.  I ended up having almost every possible complication there was.  Pneumonia with partially collapsed lung, infection in both breasts and at abdomenal incision, DVT right leg and pulmonary emboli and my right vein graft from my abdomen did not take, so they did a vein graft from my arm.  Although I have some nasty scars on my arm, their expertise saved the flap from dying.  I was in the hospital for 12 days and sent home with IV antibiotics and anticoagulation therapy.  With that all being said, would I do it again?  Yes.  I do not believe it is typical to have all of these complications.  What ever you decide to do, make sure you ask questions and what if's...if you decide on reconstruction ask your surgeon how many of these surgeries they have done and what their success rates are or what percentage of flap necrosis they have.  Good luck to you!

May 23, 2012 03:20 PM NatsFan wrote:

Agree with dlb 100% about getting to an NCI Cancer Center with a Breast Center.  You've had so many tests, surgeries, biopsies, etc.  and each time you go through a procedure there seems to be another "surprise" result that the medical team didn't seem to expect.  Get a consult from the top people at an NCI Center.  They'll go over your case with a fine tooth comb from beginning to end.  They can also tell you all your recon options.  Even if you don't end up being treated at the center, you'll have the assurance of having your case reviewed by a medical team that does breast cancer all day every day. 

As for me, I went the route of staged skin-sparing BMX with tissue expander placement that took me through active treatment.  Once active treatment was over, I had a DIEP flap recon.  I'm thrilled with the results.  It's been almost 4 years since my DIEP surgery, and I honestly forget most of the time that they are not the original "girls".  

Good luck with your decision!

Do your research, make your decision, and then don't look back.