anyone brca + choose not to have mastectomy?

toni333

anyone brca + choose not to have mastectomy?

toni333

HI all,

          I saw the oncologist yesterday and she scared the bejesus out of me!  I have DCIS, grade 3, with possible hyperplasia, 1.6 cm.  I'm scared to do rads but feel I have to.  Now, she said that I should go for the BRAC test and if it comes back pos she wants to take my breasts and ovaries off/out before the radiation treatment.  This really put me over the edge!  I don't want to know and am thinking about cancelling.  I, and maybe it's just me, feel that we would all be better to deal with things as they come (my family, 2 boys), rather then having it hang over us.  I want my kids to be free from anxiety and worry...  I keep thinking about quality of life than quantity.  Maybe I still can't accept all this...anybody out there who chose not to know?  OR chose no mastectomy, etc for a positive result?  Thanks so much..please respond as I really need some guidance...

ElaineD

I'm BRCA2, and had the second breast removed (I'd had primary cancer in the first), followed by a hysterectomy. Despite all this, I still had spread, and was recently diagnosed with mets to the liver, pleura and bones. While having the surgery reduces your risk, it doesn't remove it completely, as I discovered to my cost. There's a lot to be said, for dealing with problems when they arise-good luck with your decision.

happy29

The initial shock of all of it is very very scary. BUT remember Knowledge is POWER!

No One should tell you what to do if the BRCA came back positive /negative. This is useful to help learn statistics of recurrance/a new cancer.  You can gather all teh information you need to choose what is right for you and your family. I had the test and was negative. However I have significant family history , which puts me is the same category. They only test for 5 mutations. In the future they will test for many more mutations. Knowing the result can help you make a more educated decision.

 You say that you want to deal with things as they come- you have DCIS now. It is here. You have options and if you choose to only treat this DCIS- you will be Closely monitored. The doctors first treat the cancer and then need to address the chances of recurrance /developing a new cancer. (this is part of ACA treatments) Whether you have the gene will let you know what % you are in for a new  cancer or recurrance . The issue with ovarian cancer is that by the time they detect it- it is in late stages. There is little early detection.

No One is an advocate for yourself like You. Your Doctor can strongly recommend an option but ultimately it is up to you. I hope this helps

CarynRose

Sure, you can just let things happen, and if you are BRCA2 pos, that might make sense, but not BRCA1.  Let me tell you about a day in my life and then you can decide if you want to let things happen.

 I was dx'd in 2003 with BC.  Not a problem.  Had a lumpectomy, mild chemo, radiation and I was Cured.  Not only that, but because the pathology showed that I was ER/PR neg and her2nu neg, I didn't even have to take tamoxifin.   This was before they had even named triple negative breast cancer, the most aggressive kind that 85% of BRCA1 pos have.

 Well, four years later, a routine breast mri found that I had a recurrence in my lymph nodes and oh yeah, it spread to my lungs and I was now Stage 4, no longer curable. 

 Two years later, I"ve had mets to my central nervous system, my face is paralyzed, radiation has destroyed nerves in my back causing me to be unable to feel from my braline down to my feet.  I can't feel my fingers or my toes.  

We just got me back into remission and pray that this lasts long enough for me to catch my breath and get my strength back.  In the meantime, my knees buckle when I try to climb stairs, and I'm not secure using a walker.

 So, if you want to 'let things just happen', by all means, go ahead, but do it with full knowledge of how your life could end up.  I doubt if you want your sons to watch you go through that.

 Sorry for my bluntness, but I am tired of so many previvors waiting until they get cancer because they think it will be a walk in the park and temporary.

CAryn

hrf

I was initally diagnosed with bc in Oct. 2004 - it ws IDC, triple neg, 3 cm, grade 3, no lymph node invovlement. I had lumpectomy, chemo, rads, .... and also found out I was BRCA2+     and had bso following rads    In January 2009, I was dx with a new primary in my other breast....ILC, 2.2 cm, ES+/PR+, with 4 nodes involved. This time I did bm and still had to do chemo, rads and will be taking hormone therapy as well. Onc had recommended pbm following first time. I refused. Did heavy duty surveillance but it obviously didn't work well.

You have to be comfortable with your own decision

toni333

Okay Ladies,

                    After reviewing all your responses...I decided to go to Yale tomorrow as scheduled and follow through with my appt.  This will give me an educated answer to risks and follow up treatment for the future by having the brca test.  I really wanted to bury my head in the sand I think...Ugh.  Thank you all.

                                          Toni

swimangel72

Toni - cyber hugs for you - for changing your mind - and for my beautiful sisters here who have shared their experiences. My heart is glowing with love for all of you! May your BRCA tests be negative (mine were Toni - it was such a HUGE relief!) Hang in there -  and may God's angels watch over ALL of us!

smithlme

Toni,

There's a web site called FORCE (Facing Our Risk of Cancer Empowered) at www.facingourrisk.org. It is for BRCA 1 & 2 people...

Linda

toni333

Thanks Swimangel and Linda...

                                         I love your loving nature Swim and will look at the web site Linda.  xoxo

rgiuff

Toni, I'm curious, why does your doctor want you to have the BRCA test?  Do you have a family history of Breast and/or Ovarian cancer?

toni333

Rose,

         Good question...I have 3 second cousins who all had some type of cancer (breast, uterine) ...all sisters.  My Mom had a treatable brain tumor and then 3 mo. later her mom died at 80 of a brain tumor.  My grandfather is unknown on my Mom's side.  Other than that, there is a long line of longevity on my Dad's side except for his 3 cousins.  I don't feel I'm at risk...maybe others will...HA!  I have Dcis 1.6 cm grade 3-0/3 nodes.  May I ask, did you have rads and take tamoxifen?

rgiuff

Toni, yes I had Radiation and started tamoxifen in November.  I was diagnosed a little over a year ago at age 47, and BRCA testing was never even mentioned by any of my doctors, so I'd be curious to know why your doctor thinks it's needed.  I've read that sometimes it's recommended if one is diagnosed under the age of 50.  I wonder if that is your situation?

I've never asked for the test because I have no family history, and I'm not sure I'd want to have to deal with the decisions that would come along with BRCA+ status.   I don't want to surgically remove anything unless I know that it's diseased already.

Even if you do turn out BRCA+, the breasts can be monitored for cancer, but the ovaries are where the cancer is difficult to detect, so doctors usually definitely advise removing them.  But the majority of ovarian cancers seem to occur later, after menopause, so if you are young, it's not something that usually has to be done immediately, especially if you are still of childbearing age.  The benefits of keeping them longer are many.

CarynRose

Please go to  www.facingourrisk.org and study up on the BRCA and other hereditary mutations.  Depending on the mutation, BC and Ovca can come on as early as the 30s.  And, if it's BRCA1+, 85% will get triple negative breast cancer, the most aggressive kind (I know, it's  what I have).

 Rose, you are probably thinking of BRCA2 mutations, which tend to come on later.

 As far as being proactive and removing breasts and ovaries, I suppose you could wait and get cancer, go through chemo, and end up like me with stage 4 disease and side effects that will never go away even though I am in remission.  I don't recommend it.

I have no feeling from my braline to my feet, my face is paralyzed, and I can only stand myself up to get to a walker half the time.  I will be on chemo for the rest of my life.

It is my hope that others will learn about what I have gone through and be PROACTIVE.

CarynRose

Barbara4122

My sister was dx at 41, had chemo\rads.  New primary in other breast @ 43, rads?\tomaxafin.(caugt early thanks-God)

Docs had recommended BRCA test after 1st Ca (because of age, ashkenazi Jewish, Grandmother had Ovarian Ca) but she did not do it.  Eventally after 2nd Breast Ca was tested and BRCA1+.  She had BiLateral PBM and says she could have saved herself some heartache if she had tested and had BiLat PBM after 1st dx.  It is more difficult to reconstruct radiated skin so that is something to take into consideration.  Good Luck Toni!

(I am BRCA1+ and had PBM w\expanders on 6/16/2009. Decided not to wait for Breast Ca.  Yes I know I can still get it but I have to assume my risk is much lower now.) Also had ooph in 07.

CarynRose

Barbara,

I'm so relieved that you had the surgery.  You are so right to take control of your life.  Yes, there may still be a risk, but it is so much less (actually, less than that general population).

 Cheers,

Caryn

Barbara4122

Hi Caryn,

Hope you are feeling better today.  I see your (Steve's) posts on the FORCE board and

I am in awe of your determination and how you sometimes manage to infuse some humor in your posts.

I wish you well and continued remission my dear.

Barbara (Philly Force).

ElaineD

Glad that you've decided to give this some more thought. Hopefully your fears will be unfounded-from your family history, it doesn't seem as if you're at high risk for the genetic form. But at least getting an answer will enable you to make an informed decision-good luck. And you know, even despite the fact that having prophylactic surgery didn't stop me having multiple recurrences, I think I would do the same again. Even if it didn't help me , it still gave me peace of mind for a few years. But, tackling problems when they arise is still logical-try not to panic too much until you know if you have cause to do so.

toni333

HI Girls,

           I did it. I had the blood test done yesterday.  I am so blessed to have so many people respond and share their stories.  I will put the rads on hold until my results come in.  I wish that reconstruction could be used after radiation if I decide to hold off...It makes this so hard.  There is something about hanging on to my natural breasts and nipples that make this so hard...sorry Carynrose...I know I need to let it go if I have too!  It's just a real shock.  NOW...DID anybody try nipple sparing reconstruction?  MY Doc's here in se CT say no good...

HelloFromCT

Hi toni,

I'm also in SE CT.  I am trying to work it out to go to NOLA for DIEP.  They do skin and nipple sparing when it's appropriate.  If you have the chance, do some reading on the DIEP and NOLA threads.  You'll see why so many women go there for surgery.

I don't have a PS here.  Once I decided I wanted DIEP, I've been trying to get set up for NOLA.  There are some good PS's here--the one recommended to me was David Passaretti in Darien.  I think he does DIEP too, but I'm not sure how many.  There was a thread here someplace where some women from CT had their recon done by him (implants) and they were all very happy.

toni333

Hello from CT,

                     Thanks for the info...Now all I have to do is figure out what NOLA is...HA! ( Just looked up DIEP). Seriously though...Thank you...I will look it up.  Best wishes to you!

LISAMG

FYI:

Robert Allen is doing DIEP/nipple sparing procedures here in NYC with a fabulous breast surgical oncologist. Allen also works in New Orleans and S.Carolina. For those who may not want to travel so far, NYC is a great option. He is a pioneer and trained most of the NOLA guys. Either way, they are all great micro vascular surgeons, but wanted to let others know about the closer location.

g94u67

Can you say Recurrence after just 5 months of chemo? Well that's what happened to me.

I was ready to have prophylactic DMX after discovering I was BRAC1+ right after my lumpectomy in 11/08. Well didn't make it. Now I've got recurrence and in desperate search for new chemo, & TX AGAIN. What gets me is that report came back 10/31- 6 days before lumpectomy surgery! BS said I wasn't going to be gene positive because mom would have been. Boy was he wrong.

 It kills me I didn't do DMX. Do it Toni. 

Jeannine

toni333

Jeannine,

              I'm so sorry!  Let me understand...You put off the mastectomy? I'm learning abbreviations still...And what report came back 6 days before lumpectomy?  The brac?  I'm surprised that your breast surgeon wasn't more knowlegable on the subject because as we know the male gene can pass this on as well.

             Also, if you come up as ER-/PR-, you don't have to take the tamoxifen, correct?

                                                                                            TONI

g94u67

Toni,

Yes I put off MX because I didn't have my gene results until after November (my surgery). (It's dated 10/31 but wasn't given to me until late November). Even though I'm a TN (that alone should have told me to get mastecomy!) Dr's suggested I was a candidate for lumpectomy. My tumor shrunk dramatically and after chemo no resid. cancer. So they thought.  

Me being vain too also wanted to preserve my breast(who doesn't).  

Right. Since I had a small amount of Progesterine, my dr. did prescribe Tamoxifen but since my recurrence I've stopped.

Good luck to you !

Jeannine