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aramance
Posts: 5
Joined: Sep 2007

Hello all.  I'm new to this board. I was also a poster in the non Hodgkin's lymphoma link 12 years ago.  I was recently diagnosed with BC, stg I IDC, during a preventative bilateral mastectomy for being BRCA 2 positive.  Nothing was ever seems on mammo or during SBE and the doc BE.  So, now, honestly, I don't know if I can really even be called a breast cancer patient, though, I am going to have to do the chemo done after being diagnosed.  I'll do TC x 4 rounds.  this is my second bout with cancer, as I had Primary mediastinal B cell lymphoma 12 years  ago with a 12 week dose dense MACOP-B treatments.  I know it sounds presumptive, but I guess I needing    affirmation that I am a cancer patient (I've heard a number of disparaging remarks, not here though, from breast cancer patients talking bad about those of us who had preventative mastectomies for the BRCA genes).  I just don't know where to fit in and whom to talk to.  I feel lost, sad, angry for many reasons, and scared, since I have already done the chemo thing once.  Thanks a ton, in advance, for talking to me and listening to my being a not mess right now.

 

Laura

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

Welcome Laura, even though you didn't really didn't want to come  here to begin with. It seems to me that when you went in for the preventative mastectomy you were not a "cancer patient" as you had not yet  been diagnosed with breast cancer. When you came out of the surgery you had the diagnosis. In addition, a doctor does not prescribe chemotherapy if a person does not have cancer. Chemo=cancer, no matter what the stage.

You have every reason to feel lost, sad, angry and/or scared. You have already been through a lot and will be going t hrough a lot more. You probably feel like you have been given more than your share of medical issues and  heartache - I know I would.

The ladies AND gentlemen who post here have a wealth of experience and are always willing to share. You are never alone.

IRENE

TraciInLA's picture
TraciInLA
Posts: 1829
Joined: Jul 2009

Amen to that, Irene!

Laura, I don't think any of us here care HOW you became a cancer patient -- you've heard those words, "you have breast cancer," that makes you one of us, and we're here to help you any way we can.

It always breaks my heart to hear that someone is dealing with yet another cancer diagnosis after already completing treatment -- but we do have several folks here on this board who've also gone through cancer treatment more than once, often for different forms of cancer, and I know they'll especially be able to offer support to you.

I also did 4 rounds of TC after my surgery 4 years ago -- I can tell you they have more drugs for side effects to choose from now and better ways of dealing with side effects than they did when you first went through chemo 12 years ago, so don't be shy about taking advantage of everything your oncologist can offer you.

Traci

camul's picture
camul
Posts: 2004
Joined: Dec 2010

These ladies have been so supportive and rather than blast you for having a preventative mastectomy, I applaud you. I have foru sisters and I had the Braca test, I know everyone of them would have considered and 2 for sure would have had the mastectomy, especially after watching what I have been through.
And thank God you did have it or the bc may not have been found until ot was a much higher stage.
I wish you the best with your chemo, BC was also not my first cancer. I had cervical cancer at 22. and was told with my first bout of bc t by one onco that I would never have a recurrance and here I am 11 years later back fighting the nasty beast.
Hugs and prayers and know you are with a very supportive group!
Carol

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

I cannot believe how you have been treated in the past for having preventative mastectomy.  I wish I had done that years ago and avoided all this now.  Some people are ignorant and it is illegal to smack the stupid off of them, so you can only ignore them. 

You only need to deal with what is happening to you, and what you need to get through this.  Know we are here for you, to pray, encourage, inform and even just to listen when you need to vent.  Sorry you had to join this group, but we are all in this together and we are here for each other.

When do your chemo treatments start?

You are in my prayers.

Sandy

aramance
Posts: 5
Joined: Sep 2007

Thank you, all, I feel a little better about things.  I spoke with my oncologist yesterday, so we start chemo tomorrow.  I'm hoping things go well, I'm sure they will.  I figure things are better than they were 12yrs ago, I don't need radiation, and hair grows back :). Plus, I have, or had, a good shaped head...as long as that remains the same, things should work out ok.  Thanks again, and I'll let everyone know how things go :)

Laura

Candi Cane
Posts: 161
Joined: May 2013

Welcoming you and adding lots of good luck and hugs!

Candi

cinnamonsmile
Posts: 1042
Joined: Dec 2010

I am sorry that you have breast cancer. But it doesn't matter how it was found. If you have any kind of cancer, you are a cancer patient. Thank goodness you were so proactive in getting the preventative mastectomy. I had knew I had cancer, and had a double mastectomy. There was a member on this board who said something like, "You had a BMX for just DCIS?" So I understand exactly how you feel about people second guessing your decision. WE ALL choose our treatments based on our cancer and what we think is right. We should never question or criticize another's person's choices for how they treat their cancer.

I wish you luck and hope you come back here for support during your treatments. You can really learn a lot from the ladies and men on here.

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

You will never hear a disparaging word from me about your preventive mastectomy.  Turns out it was an excellent call.

I was diagnosed with Stage 3 breast cancer 26 years ago at age 33.  My older sister was diagnosed with Stage 1 a fews years later, then my youngest sister was diagnosed with Stage 1 a few years after that.  We were all under the age of 40.

All 3 of us ended up having bilaterals even though we are BRCA negative.  My younger sister was found, not unlike you, to have another Stage 1 IDC far from where the surgeon would have done lumpectomy.  We all decided to have bilaterals because the specialists said that our cancer is most likely genetic and more likely to recur.  I am not recommending bilateral mastectomies for all, but there are cases (yours and mine) where, in my opinion, it seems foolish to wait and hope that radiology is 100% able to diagnose and protect us.

This year my remaining sister (there are 4 of us) chose to have a bilateral preventive.  She did not have cancer.  If anyone said anything disparaging, I think I would sock them.

I now have Stage 4, but continue to fight on.  My younger sister had a local recurrence many years ago, but is fine now.  Other two sisters have now remained clean.

You have breast cancer and you definitely belong here and are most welcome!  Many others here have had more than one type of cancer, so you are not alone.  Hugs and prayers and please let us know how you are doing!

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