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LoveHunter
Posts: 1
Joined: Dec 2012

Hello. I am new to these discussion boards and am looking for some help in clearing my head and making one of the toughest decisions I think I have ever been asked to make. I was diagnosed with infiltrating ductal carcinoma on 11/20/12. The tumor size is 2.5cm in my right breast. I did a BRCA test and it was negative. There is no history of breast cancer in my family. My surgeon has left the decision up to me whether to have a lumpectomy or mastectomy of one or both breasts.....needless to say I can't seem to make a decision that I feel good about. Part of me wants to conserve my breasts and another part of me worries that if I don't act now and just have both breast removed that I will have a recurrence and have to go through all of this emotional and possible physical pain again. I am only 30 years old and my main goal is to just simply live to see my 5 year old son grow up and grow old himself. I was told that both the surgical procedures have the same success rates for survival, so how does one decide which one to do? To make matters worse the two most important men in my life disagree about what they think is the best option. My father can't stand the thought of me having a mastectomy if it is not absolutely necessary and my husband worries that if I don't have a mastectomy that it will reoccur and we will go through this again. Can anyone share with me how they made their own personal decisions on surgical procedure or give me any insight that might help me to make a decision? Thanks in advance.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

I was diagnosed in July and started chemo in August. I just finished. My tumor was only 1 cm, but had spread to 3 lymph nodes. I had a lumpectomy at first, but all the margins showed DCIS, so I need to have a masectomy. I decided to have a double, which I will have Dec. 19. My surgeon said that while survival rates are the same, recurrence rates are not necessarily the same. She said there was a 1-2% chance of local recurrence per year without masectomy, so the younger you are, the more time you have to develop a recurrence. This sounds logical. I'm 43 and hoping for many,many more years and did the math and decided to a double and just be done with it. A double masectomy doesn't eliminate the chance of recurrence, but it does seriously reduce it. At first, I wanted to do everything to preserve my body, but once I got those stats, it seemed obvious to me what needed to be done. I also am going to a great team who does direct to implant reconstruction, 2 surgeons who work together all the time, so that made me more comfortable, too. Since I haven't done it yet, I can't say how I'll feel afterward, but right now I feel confident about my decision. Hope this helps. Good luck with everything. I know how hard it is to make these kind of decisions, very emotional.

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

You should listen to your gut and what give you peace. I think that is
important. My doctor's did a lumpectomy on me first . Like you I was young
And they thought i would want to keep my breast. Everything went so
Fast. My cancer was aggressive and they did not want to waste time. I
Was in surgery a week from my diagnosis. Boy did i get a crash course
In cancer during that short time. I later decided on a mastectomy for
My own peace of mind and i never looked back. But i had really not
Given reconstruction much thought it was on my back burner. And
Doctors gave me the impression that it was essential so I went through
With it. Recently though I had them removed. They gave me discomfort
And some other issues that i think stem from my implants. I feel good
About my decision. My breast don't, define me . My health on the other
Side is imperative to the life i want to lead. You see we are all so different
Educate yourself and then go with gives you peace of mind.

Hugs,
Ayse

.

camul's picture
camul
Posts: 2005
Joined: Dec 2010

I talked to the breast surgeon still couldn't decide. Went for a surgical biopsy (culdn't get a needle biopsy). We decided if she took out the lump (a lumpectomy) and had clear margins, I would go with that. She took extra tissue and there was one area that was not clear. I asked what she would do, and she said a mastectomy. A week later I had the mastectomy. My insurance denied a bi-lateral.

I was 44 and just wanted to get rid of it and never go through it again. I had the surgery, then chemo and reconstruction. I have never regretted my decision. This is such a personal choice and only you can make the final determination.

I wish you the best.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I had chemo first, so I had those 4 months to struggle with the decision between single or bilateral. With my dx of triple neg inflammatory BC, lumpectomy was not an option. Reconstruction was also not an option. That left me with a choice of bilateral or single mastectomy. I eventually chose to have a bilateral mostly because I wanted to be even. I wear prosthesis and am content with them. I'm not interested in any additional surgeries at this time.

As for the men in your life...If it were me, I would give your husband's opinion more weight. Especially if you are happy and see yourself with him for the next 50 or so years. (No insult intended, I just don't know your situation well.) After all, your husband gets to 'interact' with your breasts, so in my view his opinion matters.

One thing to consider, even with a mastectomy surgeons do not take ALL of the breast tissue. So you still MIGHT have to deal with recurrence down the road. Wouldn't it be nice if we had that crystal ball? And whatever you decide, it doesn't have to be permanent.

I am sorry you have a reason to be here. Please come back and let us know how you are doing.

Hugs,

Linda

Dakota128's picture
Dakota128
Posts: 14
Joined: Dec 2012

Hi, I had a breast reduction in October and 2 weeks later, I was told I had DCIS, I'd be lying if I said it didn't bother me. I went home and meditated for a few hours and realized that a double mastectomy was my choice because I didn't want any part of the BEAST left inside me. Like the men in your life disagreeing, my husband felt I should go with the hormone therapy and the radiation which was not my thought process. After soul searching for days, I definitely believe that removing both breasts and reconstructing them is my best piece of mind. This decision is not made lightly, however, I also believe that a woman that decides to remove her breasts doesn't make her any less of a woman. I had a total hysterctomy at the age of 25 (I do have 2 grown daughters) and I didn't feel any less a woman because I didn't have a uterus. It's what's inside a woman (her soul) that makes her a woman, not any body part. After all, I believe that our body is only a vessel we use while on our lifes journey and the soul is what lives on.
I hope you deeply soul search and you will come up with the right answer for you, don't let someone else make that decision for you, you are the only one in your shoes, not anyone else.
I'm here for you,
Hugs,

dakota a.k.a. Deborah

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Yes, it is a difficult decision and the advice to go with your gut is good. But, only after getting as much information as possible. I think a second opinion would be helpful before making such a big decision.

You asked for how we made our decisions. In my case, I was diagnosed the end of Dec last year with Stage 2 triple negative IDC. I also had a negative BRACA test, My oncologist and surgeon recommended chemo, then lumpectomy, then radiation and said the results would be as good as with mastectomy. In addition, doing chemo first would allow us to immediately see how well it was working. I got a second opinion at a large university cancer center that said the same.

The tumor completely disappeared to feel and on sonograms with the chemo, so I felt it must be working everywhere else any wayward cells had gone. So I had a lumpectomy which showed clean margins and 3 clear lymph nodes. I then had 30 radiation treatments and will have a follow up mammogram and sonogram later this month.

My mother had a radical mastectomy in the early 70's. It came back in the other breast in the 80's and she had another mastectomy. It came back in the chest wall in the 90's and she died from that in 1997. Of course, they did not have all the chemo that is available today. But having experienced that and knowing that mastectomies do no remove all breast tissue, made me decide against that option.

Of course, I'm 30 years older than you and this is just my personal story. You have to do what feels right of you. Don't we wish for crystal balls? You are in my thoughts and prayers as you navigate this journey.

Angie

kacee999
Posts: 109
Joined: Oct 2012

IDC and DCIS in left breast. Microscopic met in sentinel node. Had first lumpectomy December 7 last year. Then they wanted to get additional nodes, etc. and I said forget it...take everything, so they did. I would feel like I had a time bomb on my chest...didn't want that. Plus, if you have reconstruction after having one removed they will NEVER match. I wanted a level "playing field" for reconstruction. I don't regret it for a minute. I have never been defined by my boobs. I am actually impressed with your husband's attitude. Remember, your father is of a different generation, and his decisions might be based on other criteria not important to us.

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

First, welcome to the group no one wants to be a member of!!! (cancer warriors).

Faced with that decision, and odds similar as with you, I chose lumpectomy. Yes, yes, there were all sorts of physical reasons, having just had 3 major surgeries for rectal among them. But in the final analysis, I was not yet ready to face removal. I have too big of an ego. AND I was still adjusting to all the changes in my body image from the other cancer...including an 8" 'up-and-down' scar on my belly.

As others have already said, it's such a personal decision. YOU are the one that will live with it. Whether it's the 'roll of the dice' that cancer can come again (I knew it could...I was hit with 2 separate ones in 6 months), or the adjusting of the body image that comes from removal.

I had had enough surgeries and hospital time, so I wanted quick. 2005 had me more in the hospital than out (8 days with a J pouch procedure where they gave me a new rectum), a total bowel obstruction (5 days) and all of the chemo/rads. If there would have been a dramatic difference in the rate of reoccurance, I would have followed that choice. But there wasn't, so I wanted a quicker recovery time (mastectomies would have involved reconstruction, and weeks if not months of waiting).

BIG hugs for making a decision that is right for you! Kathi

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