newly diagnosed and need mastectomy

mayentes

I was diagnosed with DCIS after a two sterotactic compression biospies on 12/13/11.  PC set up an MRI and an appointment with a local surgeon and mentioned that mastectomy might be the recommendation.  Totally freaked by that.  Had MRI on 12/23/11 and received the report on 12/27/11 that the recommendation was mastectomy due to large area of DCIS and other multi-focal areas.  At this point, decided I wanted to go into Boston rather than stay at the local hospital.  All test results, pathology slides, mammograms etc, were sent to the surgeon at MGH and got in very quickly.  After the team reviewed, they did not believe mastectomy was required and set me up for wire localization lumpectomy and expected rads for 6 weeks.  Such relief!  had lumpectomy on 1/17/12 and received final pathology on 1/31/12.  Large 8.5 cm lumpectomy, good news all DCIS.  Bad news, no clean margins and surgeon does not believe additional lumpectomy with get all - so recommending mastectomy.  This has been such a roller coaster.  meeting with the PS on 2/23 to discuss DEIP.  If I am not a candidate, then have to decide which way to go.  Don't want to lose muscle with a TRAM, don't want implants.  Also trying to decide if I should go bilateral rather than unilateral.  Can't stand the idea I could ever have to go through this again.  It has been a total nightmare, but am trying to be calm and also be an educated consumer.  Any help or suggestions regarding Uni vs. Bi lateral?  How long is the recovery period?  Do I need someone to stay with me in the hospital all night?  Thanks for your input.

goldlining

You will find a ton of information on the DIEP 2011 thread in Surgery Before During and After and DIEP 2012 in the Reconstruction forum. 

Several people have posted that some specialized centres can find fat to do a DIEP where other PS will say "you are too thin" so look for second opinion if you need to. There are also other places to get flaps such as hips. 

I had the same values as you (did not want muscle flap or implants). Someone posted a comment from their surgeon that anyone who is eligible for TRAM has enough fat for DIEP. Interesting information. I had the mx as soon as I got the same news as you: the lumpectomy might have missed something, but the surgeon would not do a prophylactic mx on the other side at the same time. I escaped to another hospital via the reconstruction route, and had the prophylactic mx at the same time as a bilateral DIEP.

There is no need to have anyone with you in the hospital at most modern first world hospitals anyway. You will be in a step-down intensive care unit and checked every hour at first. I stayed 5 nights. I did need some help at home but it was primarily for fetching things. I had a home care nurse to help with drains and remove them.The drains came out much sooner than with the mx.

I was told to expect to be off work for 6-8 weeks. I will be off longer simply because I can't get in to see the surgeon for the letter of fitness to work sooner. (I don't care; I have plenty of sick leave. Management is grumbling but the obstacle is of their creation. I'd work if management would let me, and have secretly been working a bit since the second week.) Return to work depends on the nature of your work; you can't lift >10 lb for 8 weeks. The other obstacle that isn't really documented on the rehab agenda is the mental concentration; I found even from the lumpectomy I had a hard time getting my head back on straight, and the DIEP was a longer surgery and spotty sleep for a while, and that can affect concentration. I can focus; I just can't decide when my ability to focus turns on and off.

As you will see in those threads, it's a very do-able surgery. Picking a very experienced surgeon is the most important step because at the most important times, we're asleep and in their hands. 

mayentes

goldlining,  thanks for your post.  this site has been very helpful and I'll check out the deip 2011/2012 threads

mdg

I am very sorry about your pathology and the doc's recommendation.  It is a rollercoaster for sure and emotionally draining.  I opted for BMX with a Stage 1 dx.  I met with two plastic surgeons and was not a candidate for DIEP which was disappointing.  They would not do any muscle procedures on me either because I workout a lot and they feared it would change my quality of life after.  I was only a candidate for implants for reconstruction.  I went with it.  I completed reconstruction in December and am very pleased with my implants and results.  I was not crazy about having a foreign item in my body (implants) but the alternative of being flat was not an option for me personally. 

Things to consider for BMX for UNI - if you do both, you lose sensation in both breasts.  You also will have a better chance of good symmetry between your breasts as they will both be done the same way.  If you do a UNI talk with your surgeon about matching them to your other breast.  Sometimes they have to lift or augment the good side so they can match things up so you end up having work done on both anyway.  You will be able to keep your sensation if you don't have to mess with the other side so much.  Just things to consider.

Best of luck.  I hope all goes well.

mayentes

mdg,  so it was a year from your diagnosis to your final reconstruction?  I'm going to need a lot more patience.  just want this to be over and never look back.  thanks for your comments.

Blessings2011

I was a dx with both DCIS and IDC in the left breast. The Breast Surgeon offered a lumpectomy with rads but because it was multifocal, she felt I wouldn't be satisfied with the results (she'd have to take a huge wedge of tissue out), and that a MX would be better. Well, I was a 38DD/38DDD, and there was no way they could match the girls up even with a reduction on the right (which I had always wanted) so the decision for a BMX was easy.

That, plus the fact that with my history (Mom had BC) and that I had very dense breast tissue making it difficult to diagnose the right side, made me feel very comfortable with my BMX decision.

I am 9 weeks out from surgery, healing very well, and 2/3 of the way through my fills. I got TEs in preparation for saline implants in a few months.

crystalphm

I totally freaked too, for weeks. What an awful thing to have to hear, that you have cancer and have to lose a breast.

 I had multifocal DCIS too in one breast, and had the mastectomy 20 months ago. Then 4 months ago, something showed up in the remaining breast, and I had a second mastectomy, it was NOT cancer the second time around, but I could not deal with all the emotional rollarcoaster stuff...so I just opted for a second mastectomy.

Not the right choice for everyone, but so far, I am happy with my choice. I did not have reconstruction, I just want to be cancer free for a while and will deal with reconstruction some other time. or maybe never.

mikita5

Mayentes: Your question of whether to do uni or bilat is one you have to make yourself.  Just educate yourself all that you can and make your decision on what you can live with.

As for myself, I had DCIS in one breast but opted for bilat mx with immediate DIEP reconstruction. Like many others, I couldn't live with all the checkkups and scans, etc.  I just wanted to do all that I could the first time around and hopefully not have to go thru it all again. .  Also, I avoided rads by doing bilat.  (another note: my pathology report came back with 2 more DCIS spots in the cancerous breast, so I did the right thing!).

My surgery was supposed to be a 14 hr one but the two surgeons did it in 12 hrs. Surgeon said when she got in there all the arteries, etc. she needed were just laying right on top (that was from God and lots of prayers) and she had no problems at all!  Recovery was a hard one, but any surgery is hard. I was back to work in 6 weeks.. Only after the 5th week did I feel really good enough to do anything, then it was almost time to go back to work!

If I can help with any questions, please yell on here or PM me.

Hugs and prayers to you. I hope your journey is a smooth one, with no complications at all!