reconsruction

suz45

reconsruction

suz45

OK.. Long story short. I had a lumpectomyt with snb, chemo then radiation.

Everything really went ok.. I thought (considering)..

But midstream I found out that I was BRCA1+.. Now I think (I'm really freaking out) that I made way too many wrong decisions.

Honestly...should I have had both breasts removed?? (Nobody even remotely discussed this with me seriously)  also.. because I've had radiation does that mean "if" I have to have more surgery (reocurrence or reconstuction after said) that I cant have any reconstructive surgery done??

 I really wasn't even remotely informed when this hit and now I am so scared that I made the wrong decisions for my true situation .(hindsight)

Nobody talked to me about the risks "triple neg & brca1" until after I had almost completed my current treatments. Did I make a big mistake and now nobody wants to talk about it?? The only response I got from my radiation tech was "we were only concerned about your life not your looks"

The big thing now seems to be having my ovaries and tubes removed, thats ok... but what about my breasts. Is this my new timebomb??

Sorry for ranting but i would so appreciate any input or advice.

Sincerely, Suz

Where do I go from here???

dhettish

Hi Suz,

It is hard to make a decision when we begin this journey because we just don't know. My onc thought a lumpectomy was fine. My surgeon said at least a single mast since the margins were clean but too thin for his peace of mind. My cancer grew in a fibrocyst and I had fibrocyst in both breasts so I opted for a dbl mast. I had no idea of TN. I have never had the gene test. My onc never said anything about it. I don't think it matters now. I have done everything I could.

I do know there are women on this forum who have had recon after rads. I think it just takes a little longer to stretch the skin due to the damage.

I am sure there are more TN women out there with experience with lumpectomies. Don't second guess yourself or jump to decisions based on fear. Wait and hear from them and gather more info before making your decision. 

As for the ovaries, I thought we TN's did not have to have them out since our cancer is not hormone generated. Was this recommended? No one has said anything about that to me. That is why we don't have to take tamoxifen. I am curious about that.

Take care and the good news is that with regular BC, the chance of recurrence stays the same throughout their lifetime. Our chances, though higher during the first 3 years go way, way down after 3 years and I have heard that some say we are "cured" after 5-7 years. So as much as I hate counting down my life, I can't wait for my 3 year mark.

Debbie 

CaNatalie

Hi Suz,

I really think you should go get second opinions from a oncologist, surgeon and a plastic surgeon (to go over your recon options if you so choose). I think http://www.breastreconstruction.org/has some good answers and pictures on women who did lumpectomy/radiation and went on to have reconstruction.

When I was first dx and waiting for my brca results both opinions I received (from local Dr and big teaching school hospital) was that if I was brca+ that a bilateral would be recommended. I have met several ladies on here who first had lumpectomy and then went on to have bilateral/single mastectomy.

Try not to worry that you made the wrong decision. You made the best decisions for yourself at that time. I think what your radiologist said was insensitive. It is not always about looks, it can be about protecting our long term risk of getting bc again.  You also might want to check out http://www.facingourrisk.org/to meet other women who were brca+ and learn more.

Take care,

Natalie

CalGal

Hi Suz -

Another BRCA1 triple negative here.

I can relate to your concerns ... I knew i had a strong family history of bc (mom and maternal grandma).  After being dx'd with bc, I met with a genetic counselor.  She was caught up in the numbers as to whether I'd be positive or not (and she annoyed my DH and i).  I did not take the test and find out I was BRCA1 positive until AFTER my recurr bc and mets dx.

On my initial dx, I had bi-lateral lumpectomies, SNB (all clear) and then 38x rad'tn.  I was borderline for chemo and being a newlywed wanting kids, did not do it.  I did NOT know that bi-lat bc (in my case, invasive & DCIS, or that being a 3rd generation dx'd pre-menopausally with bc were glaring red flags for the BRCA mutation).

Whle NED for 13 mos, I was consideirng a bi-lat mast (due to BRCA1) and recon.   There are may recon options available, although my preference was for implants (which yes, would have been made much more risky due to having had rad'tn on one side).   I had 3 consults with PS''s.  One key point was that my rad'td skin was what it was - and that immediate recon NOT expanders made the most sense if I was intent on doing implants.  (However, haivng mets, I was told that the "horse was out of the barn" in terms of a mast now ... and I got a recurr of mets before I made a decision).

An outstanding book on mast, lump's and recon is "The Breast Reconstruction Guidebook, Issues & Ansewrs from Research to Recovery" by Kathy Steligo.  It is available from through the FORCE website at www.facingourrisk.org (a great source of info for those who are BRCA positive).

Even now, I have not had my ovaries out.  I know I should ... but I have my reasons ... 

In the future, if I were you, I would insist on breast MRI's rather than mamm's ... and I would push for a baseline CT (which I had asked for after my initial dx and never got) ... IMO, a dirty secret of the breast cancer world is that while bc most often spreads thru the lymph nodes first, it can spread thru the blood too.   I've had mets 2.5 years and my lymph noces are still clear!

I too may have made different choices if I knew then what I know now.   But, you and I made the best decision with the info we had at the time.   I have to go forward ... and since the recurr bc & mets dx, I consider my job to be a be reserarcher with the particulars on my case and have a collaborative relationship with my onc's ... which has served me well since.   Go forward - and don't beat yourself up on the past!

Best to you, 

CalGal

AnnieMc

Hi Suz,

I am not BRCA +, but I did have reconstruction after initially having a lumpectomy and radiation.  In short, in April 2004, I was diagnosed with a stage 1a TN breast cancer that was mostly DCIS.  I had a lumpectomy, chemotherapy and radiation.  18 months after my initial diagnosis, 12 months after my radiation treatments, I had a recurrence of DCIS.  I had a mastectomy with immediate reconstruction, which was a lat flap with an expander.  6 months later,  I had the exchange surgery and a lift of my other breast.  It has been 2 years since my exchange surgery and  I am very pleased with the results of my reconstruction.  My nipple did not "take", but with tattooing, it looks great.  It is my understanding that your reconstruciton options may be limited because of prior radiation, but you do still have options for reconstruction if you choose to have a mastectomy.

Good luck to you with making your decisions and I wish you peace with whatever they may be.

Annie 

Msklapkin

Hi Suz,

I am TN/BRCA 2+

I had lumpectomy and had 1 positive SN.  since I was going back for Axillary node surgery, my BS suggested BRCA testing and MRI of both breasts.

No more cancer was found, but I had bilateral mast with immediate recon, chemo and then ovaries removed.

It is a shame more BS do not suggest testing upfront- the info gives us so much help to make difficult decisions.

don't beat yourself up- I had bilateral because I wanted to do as much as I could to fight the disease from showing up again.

You have to do what is best for you and your peace of mind- each of us chose differnt paths

I agree-check out facingourrisk.org - it is a good website for BRCA

You can PM me at any time if you have questions

susan

LisaSDCA

Hi Suz - I'm also one who had a lumpectomy and chemo first. But I did it that way by choice. I am BRCA-1 and knew I wanted bilateral mastectomies with immediate DIEP reconstruction. That kind of surgery takes a long time to arrange and a very long time to recover from.I was definitely not going to postpone treatment though. Get that cancer outta me and let's get on with the chemo!

After a few weeks of recovery from the ravages of chemo, I had my surgery. I believe you can do the same. Just because you had a lumpectomy and rads (the best decision with the information you had at the time) does not preclude you from making another decision now. BRCA-1 is high risk for recurrence in the same or contralateral breast, and I believe mastectomies are routinely recommended. I did not hesitate to have both mine off ; in fact, I insisted on it. DIEP recon. is often the best option following radiation  - and immediate recon. gives the PS the best opportunities for an excellent outcome. But you do have options! See some of the photo album examples at

http://www.breastcenter.com/

So, in answer to your question - where do I go from here - I personally would go to my surgeon and tell him I have decided on bilat. mastectomies and that I need a referral to a DIEP-qualiified plastic surgeon. Then do lots of homework on any MD you see. Again, in my opinion, for a BRCA-1+ woman, her breast are a ticking time bomb. Some doctors are unaware of this - 98% of their patients won't have a genetic mutation. That's why we need to learn our needs and see that they get treated. Your ovaries and tubes can come later, IMO. Yes, you are at some increased risk for ovarian cancer. But your breasts have already proven that they are fertile grounds for tumor growth due to this mutation. I'll probably have my oophorectomy sooner or later, but my specific mutation (which is included in your packet from Myriad) is pretty specific to breasts, and the "get yer ovaries out" recommendation is a general one. You can look yours up here:

http://mutview.dmb.med.keio.ac.jp/MutationView/jsp/mutview/html/brca1.html

Please do not hesitate to ask more questions. Although I sound damned opinionated, there is not only one right answer.  

Lisa

rock

I am BRCA2+. I also found out "midstream", after I had a lumpectomy, a SNB and started chemo.  I  will have radiation even though it may limit my later surgical options. I'm fine with my decision even if it's not a common one. If I get a new primary or have a recurrence, then I'll consider a masectomy (or two). But right now?  I don't think it's for me.
Dx 2/20/2008, IDC, 1cm, Stage , Grade 3, 1/4 nodes, ER+/PR-, HER2-

suz45

Ladies, Honestly..Thank you!!!

I guess "it is what it is" and I now need to do some more research. No big deal for me to have have the bilateral salpingo oopherectomy (sp?) Chemo threw me into menopause so its no big deal to have the tubes and ovaries removed.... (right??)

I wanted the summer off so I scheduled that surgery for mid Sept.

Wow, you all have brought to my attention that I may need to seriously consider a lot more surgery on my boobs... that really sucks as around here (canada) they say they will give me great monitoring through (mri's) when it comes to breasts but they cant when its on ovarian cancer.

Awww for f^$# sake, I just dont know how well my family is going to react to bilateral mastectomies and "maybe" reconstruction (k im in friggin tears now) after thinking I was done with all that crap. I mean I will do what I have to do as its about trying to stay alive..... but I didnt think I was that far yet.

Sorry for the self pity party, Im sure I'll get over it. So many of you have things so much worse, so Im sorry if Im being self centered.... Big hugs to you all and many thanks for all your information, Suz

Msklapkin

Suz,

You are free to rant all you want here.  You had the BRCA test- did you see a genetic counsellor at that time?

Perhaps you should sit and talk to your onc about your BRCA status and possible mastectomy. I realize this is a difficult decision for you but your family will be supportive of your decision- as you said- it is about staying alive and fighting this disease.  It is also your body and your decision.  I had immediate reconstruction and that was very importnat for my psychological well being- I immediately had new "girls" and have embraced them.

try to stay strong and clear headed as you gather your info and weigh you options.  the important issue is to speak with BRCA experts who can give you the best info.  The science of genetic testing is so new, many docs are not as educated about it.

Good luck

Susan

suz45

Susan, Thanks, I had talked to a genetic councellor prior to the test results and then had a telephone conversation with her once she had the results. I was in the midst of radiation and trying to deal with informing my three sisters about how important testing and all that was for them.

I know she (gen coun) said I would get the best of the genetic breast cancer surgeons if I chose to have further breast surgery. I have all my follow up Oncologist appointments coming up end of July and August. My chemo onc seems to be in charge and she is my next appointment. I will have a long conversation with her about what to do next re:breasts at our next appointment.

Thanks again and hugs, Suz