Having a hard time

ShondaE

I was doing okay and now i'm a total mess again. On Oct 30 I was first diagnosed with BC, met with the surgeon and onc within 2 weeks.  They both agreed I was a prime candiate for a lumpectomy and my Onc started me off on 11-22 with neo-adjuvant chemo...I did 4 rounds of DD A/C every two weeks finished my last one on 1-6.  I was feeling very good since the Onc could tell I was responding well to chemo.  She had a PET Scan and MRI  done and there has been no mets so I was happy about that, I was already to meet the surgeon and set up the lumpectomy when my Genetisist called me in to his office.  I came back BRACA 1 positive and he stated that my whole treatment plan would change and in his opinion the only thing I should be doing is a BIL mastectomy and to have my ovaries removed. I couldn't belive it.  I had already come to terms with everything I was going thru.

I called my ONC and went in on Monday and she concured with him.  She said becasue I'm triple Neg and Braca 1 positive she also felt the best chance for me to survive this was to have a BIL mastectomy and to have my ovaries taken out. 

So now I'm trying to get a handle on my emotions and I just can't seem to do that.  It just seems all so overwhelming.  I am now beginning to wonder if I will ever get the uperhand of this nasty beast.   Now i'm depressed and crying all the time and I just can't seem to come to terms of having to have a BIL.

I'm sorry to rant and go on i'm just  a total mess.

Shonda

Anonymous

Wow, talk about being punched in the gut.  That sucks big pickles.  That said, I hope you find the strength and courage to face this new challenge.  Its disappointing, devastating, and frightening but this new path will give you the best chance of survival.  I just want you to know that you can survive this cruel disease and still have a good life.

lexislove

Hi Shonda,

First of all I'm so sorry about what you are going through right now. I initially thought I would be having a lumpectomy and prepared with that untill near my end of chemo the docs recommended a mastectomy. every emotion ran through me. I am not BRCA + but I know what your doctors are recommending is right. I'm sure there will be woman offering you guidance who have been where you are now.

When these clouds lift you will see that you docs have your best interest in mind. Ask questions, you will see.

MicheleS

Oh Shonda... so not fair.  I'm so sorry.

But, I will say; I has a mastectomy last week and it wasn't too bad.  I had planned on a lumpectomy and also got some terrible news (DCIS in another spot distal to the IDC) that caused me to change direction.  I'm considering having a mastectomy of the other breast when I start reconstruction for this one... 

I know you are hurting and this seems so unfair but you will be fine.  Just do what you neeed to to be healthy.

Michele

KPolasek

Shonda,

Don't ever be sorry for ranting!!!  Most of us could probably tell our own story of devastation ... ranting, and just plain pain.  I haven't even been tested for BRCA1, am triple negative - had lumpectomy .... so now I am wondering .... should I have had a bi-lateral.  What it boils down to is that we do what we have to do with what we know so that we can have a better chance of survival.  Sometimes, I wish that I had, had a bi-lateral and then never have to face cancer of the boob again.  Be gentle on yourself, and don't be afraid to cry until you can't cry anymore.  Someone once said that tears are God's way of cleansing our hearts.  I think my heart is pretty clean right now.  I will pray for you dear one.

Blessings,
K 

PineHouse

Shonda,

BIG HUGS for you!

It was bad enough to learn about the bc dx, had to undergo chemo and lumpectomy, I know it's devastating to find out the BRCA1 dx and would have to undergo bilat mastectomy.  It's a very drastic and life-changing step.

Bear in mind that you don't need to rush into the surgery.  You can postpone it for a few weeks to make up your mind.

But speaking from my own experience, being a BRCA1, your best chance for CURE is bilateral mastectomy.  I was first diagnosed 12 years ago (1996).  And my mistake then was that no one told me to get tested genetically and no one suggested mastectomy.  Frankly, even if the doctor suggested mastectomy, I'm not sure what I would have done.  But because I only had lumpectomy, I kept going through a recurrence every few years.  Also, because of the lumpectomy (and radiation that came with it), later on when I did have mastectomy, my choices for reconstruction were limited.

So, yes I strongly suggest that you go through with bilateral mastectomy, but you can take the time.  You can talk to friends/family.  You can research reconstruction possibilities.  You can check out www.facingourrisk.org where a bunch of BRCA1/2 people hang out and discuss their PROPHYLACTIC mastectomies.  Go through with your surgery when you're at peace with it.

Sending you warm thoughts...

flyrzfan

Shonda,

I'm so sorry you are having to deal with this. It sucks that you were half way down the road with a plan when someone changed the direction you were going. It's not fair and you are so, so right to be upset. I'm not triple neg and we all have a different view of our boobs and how important they are too us, so all I can say is ((((hugs)))) and I'm sorry you find yourself in this position. Know that there are lots of reconstruction options out there and a lot of happy girls because of the results. The most important thing in the end is that you are here. Best wishes...

ShondaE

Thank you everybody for your words of encouragment.  I think it's finally starting to sink in.  I do know this is my best option  so on Monday I will be meeting with my surgeon to schedule a date for my BIL mast..

dlb823

Shonda ~  I am so sorry for what you're going through.  I just hate it when you get through a phase of treatment and are starting to feel strong, and then -- WHAM! -- you literally get blindsided by an unexpected complication. Unfortunately, bc is so hard to completely dx up front, that it's fairly common to have the picture change drastically as test results or biopsy results or pathology results become known.  I wish they would tell us this in the beginning, though.  It would make it so much easier if we were told that nothing is definite until we have all the test results.

I guess the only other bit of wisdom I can share is to take one step at a time.  If you don't have to decide about your ovaries right now, maybe you can table that decision until you have more time to research it and decide if it's right for you.

The other thing you might do is take all of your records to another set of doctors for a second opinion.  I'm guessing that your doctors are right about your situation, but it might help you accept it if a second opinion tells you the same thing.  It would also give you another opinion on reconstruction, if you decide to go that route. 

Thinking of you, and wishing you peace with your decisions ~  Deanna

SoapMaker

Wow, Shonda. I am so, so sorry you are dealing with all of this. I can imagine the emotional toll this is taking on you. I had bilateral done. If you choose to have the mastectomies and you want to reconstruct, have your surgeon do skin-sparing mastectomies. It will leave your breast looking and feeling very close to normal when they reconstruct.

I was never tested for BRCA, but probably should have been. There is ovarian cancer on my mom's side (her aunts). I think about it often and plan to see if I can get my ovaries removed. 

 Sending you big hugs, thoughts, prayers and wishes for a speedy recovery. Blessings.

 ----------------------------------------------------------------------------------

Where is the cure???

www.truefacesofbreastcancer.org

 

guitarGrl

Shonda - 

I don't think you'd be normal if you didn't rant away.

I had the BRCA test (negative) because my onc said she'd definitely recommend removing the ovaries if it were positive - it's hard for them to diagnose ovarian cancer until it's in a late stage.

If you go to the home page bc.org, the first research news item is specifically about this.

You don't say how  old you are and/or if you want children/more children. As people have said, get a second opinion to see if a wait for the ooph is ok.

Good luck, and let us know how you are doing.

 susan

daybyday1

ShondaE, How are you? I'm thinking of you.....

ShondaE

DaybyDay1, I am doing .  I am scheduled for a Bi-lateral MX on 2-10 with removal of my ovaries at the same time.  I met with a PS who thinks it is better to wait for reconstruction until I finish the next rounds of chemo after the MX...He said it was my ultimatly my choice but he feels the results will be better if we wait.  so we are waiting.  The surgeon is going to do skin sparing surgery which is also something the PS recommended.  

Thank you for thinking of me.

 Shonda

guitarGrl

Shonda - good luck with the operations. Since you are BRCA positive, that seems to be the best way to go.

You must be in shock.

But as someone told me when I was trying to figure out what to do about treatment - you only have one chance to get it right the first time. Try going at it with everything you can.