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I was diagnosed last month

Tina77's picture
Tina77
Posts: 5
Joined: Jul 2009

Hi

I was diagnosed with DCI breast cancer last month and I am looking for advice to help me with my decisions. I have had the lumpecotmy and now must decide if I want to go with radiation and temoxifin, or masectomy. Needless to say I am very overwhelmed with all of the information the Drs. give you and trying to deal with my emotions and still keep things together for my family.

Right now I am leaning towards a double masectomy with reconstruction. My sister had her first breast cancer found when she was 26 and again at 33. She had lumpectomies only both times. My mother was diagnosed with stage 3 invasive cancer at 61 and again at stage 4 this time 2 years ago and is currently doing chemo to help prolong her life. Both of them think I am crazy for thinking of doing the masectomys right now. If I reduce my chances of reoccurance to 1% shy wouldn't I want to do that? I am seeing the plastic surgeon tomorrow and hopefully he will have answers to help me make up my mind.

I could use any advise any of you would like to share with me.

Thank you in advance for your support!!!!!

Tina

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Hi Tina. I don't think anyone can help you in making your choice. You just have to get all of the facts from your doctors and make the best choice for you. For me, I had a lumpectomy, followed by radiation treatments. I am unsure of taking tamoxifen as some others are. But, just get all of your options, get your percentages and do what you want to do.

Good luck, Leeza

outdoorgirl's picture
outdoorgirl
Posts: 1569
Joined: Apr 2009

Welcome to this site.
Leeza is right,no one can make the decision for you. I am sorry that you have such a strong family history.
I have a half sister who had breast cancer and had a mastectomy(not sure if it was a double)followed by reconstruction. I had a lumpectomy and a partial mastectomy follwed by chemo and radiation.
Sometimes,like in my case,it all depends on what they find when they do surgery.
Hope that things go right and smooth for you!
Cute pets-thanks for sharing!

DianeBC's picture
DianeBC
Posts: 3886
Joined: Jun 2009

Welcome Tina! Sorry you are here because of bc. But, we are all here to support and encourage you in any decision you might make.

Whatever you decide, just be sure it is the right choice for you!

Good luck to you and keep us updated!

Hugs, Diane

MAJW
Posts: 2515
Joined: May 2009

As said, it's a personal decision.....did you have clean lymph nodes? I had a lumpectomy two months ago. I had invasive ductual carcinoma stage II due to the size,2.2 cm....that's less than an inch.My surgeon who is a long time breast specialist said that unless there are "multiple cancers" in the breast that a lumpectomy privided the same survival rate as a mastectomy.Your's is Ductual Carcinoma In Situ, right? That means it was very contained...mine wasn't but thankfully I had clean lymph nodes and good clean clear margins.....I am now having 4 rounds of chemo.......two down, two to go....Then I will have 6 weeks of radiation. Keep in mind also that even with a mastectomy, you can have a recurrance as they cannot TOTALLY remove all the breast tissue, from what I understand.

I wish you well in all of your decision making!

Christmas Girl's picture
Christmas Girl
Posts: 3691
Joined: Apr 2009

Glad to have you here, glad you found us, welcome.

My surgery was lumpectomy (followed by chemotherapy and radiation); and, I was the very first in my family - no history, at all - for any type of cancer.

As others have already posted, only you can make this decision for yourself. Do you have enough info from your doctors? Have they provided a strong recommendation, one way or the other? (Not all do.) Please don't compare your own situation and circumstances to others - even your mother and sister. Each patient/case is quite different.

With all that being said, I have always - still do, always will - chosen the option available that most greatly reduces my risk of recurrence.

Best wishes. Visit often, whenever you need or would like to.

Your furry friends are adorable! :-)

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Hi Tina and Welcome! Like everyone said, only you can decide what treatment to take. I had a lumpectomy and radiation treatments. My oncologist is wanting me to try hormone therapy, but, I am unsure of that part of it yet.

Hopefully, your oncologist, plastic surgeon and radiation oncologist have given you their recommendations and the reasons why. If not, you need to get those. But, it still will be your choice.

Good luck to you Tina!

Kylez

Tina77's picture
Tina77
Posts: 5
Joined: Jul 2009

Hi

Thank you for your advise. My Drs have all said that with my family history there is no way that they would discourage me from a masectomy. They have filled my head with all my options and right now I feel like everything is just bouncing around in my head. After my appt with the plastic surgeon tomorrow I am hoping I will be able to make my decision.

I can not thank everyone enough for their advice and support!!!

Tina

Your furry friend is adorable too!!!

Bev1969's picture
Bev1969
Posts: 48
Joined: Jul 2009

Hi Tina,

Just wondering if your doctor has recommended gene testing for you? Since both your mother and sister had cancer, it sounds like you may be a good candidate to be tested and that may help you with your decision on what to do.

Tina77's picture
Tina77
Posts: 5
Joined: Jul 2009

Hi

My sister and I have both had gene testing and came back negative. I really do appreciate all of the info and support I am receiving from this wonderful group of women.

Tina

Akiss4me's picture
Akiss4me
Posts: 2192
Joined: May 2009

You sound alot like me when I first walked into my surgeons office. I told him "cut these babies off and give me some perky ones to keep!". However, with his advice and doing my research, I found out that lumpectomy with radiation with tamoxifen has the same survival rate as mastectomy. So, I chose the lumpectomy and had my first radiation treatment today. I'm sure you will come to the right decision for you. Do your research and most of all, be comfortable in what you chose. We will be here to support you. :) Pammy

Tina77's picture
Tina77
Posts: 5
Joined: Jul 2009

Pammy

I hope everything went well with your first radiation treatment today. I am seeing my plastic surgeon tomorrow to learn more about the reconstruction options. I also saw an oncologist yesterday. Hopefully after this next appt I will be able to make a decision I am comfortable with. Thank you for your and everyone elses support. It really means a lot!!!

Tina

Alexis F's picture
Alexis F
Posts: 3602
Joined: May 2009

Tina, just wishing you the best of luck with your upcoming surgery and treatment!

Come on anytime to the board and vent, cry or laugh. Someone is always here!

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

Hi Tina. I've gone both routes: lumpectomy and radiation nine years ago and then a bilateral mastectomy with immediate reconstruction this spring. Both times, I listened very closely to the advice of my doctors, did research, and made a decision that I knew was the right decision for me at that time in my life.

I really felt a sense of peace when I made my decisions, and I have no regrets. It was right for me to do the lumpectomy, even though I faced cancer again nine years later, in the same breast. And, it was also right for me to choose a bilateral mastectomy instead of just the affected breast, because it allowed reconstruction (for both breasts) using my tummy tissue which was one of the few options for my radiated breast.

I hope that your decision will also bring this peace.

Joyce

Tina77's picture
Tina77
Posts: 5
Joined: Jul 2009

Hi Joyce

Thank you for sharing your experience with me. I hope everything is going good for you now.

I saw the plastic surgeon today and I am feeling much better about wanting to do the bilateral mastectomy and reconstruction. He said that he would not even have to use my stomach tissue because I have a good packet already. And like you, I feel like a weight has been taken off of my shoulders and that I am making the right decision for me.

Once again I appreciate everyone's support and having someone to talk to who understands what I am going through. What a wonderful group of women I have talked to.

Tina

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I am so happy that you feel comfortable and good now with your decision.

Please keep us updated and know that we are here for your support!

Noel's picture
Noel
Posts: 3100
Joined: Apr 2009

Just wishing you good luck Tina!

I had a lumpectomy and radiation treatments. I was asked to take tamoxifen, but, am probably not going to take it.

Keep us updated!

Noel

Jeanne D's picture
Jeanne D
Posts: 1867
Joined: Mar 2009

Hi Tina! Sorry I just saw this post. I want to welcome you here and to say that we are all here for support and encouragement.

Post often and let us know how you are doing!

Take care, Jeanne

Calleen's picture
Calleen
Posts: 412
Joined: Jul 2009

But it's your personal Journey...

I was diagnosed on May 8th with IDC. it's under 2 cmm. My Mother lost her battle with breast cancer...hers recurred 2 times... I was with her the whole way.. and it's still hard to think about... My Aunt had a lumectomy 5 years ago and is now having side effects from the radiation...I made the choice to do a skin sparring bi-lateral with immediate reconstruction using my own tissue... I chose this so I could have peace of mind and not worry if it will come back in my breasts. I also will not have to have radiation because there wont be any tissue left.... I will have surgery next Wed.... I tease my friends that I'm getting a new body for my birhday which is in about 3 weeks and hopfully for Christmas I will get new nipples!!! I think they are jealous!!! LOL... But what helped me make my final choice was my visit with my Plastic Surgeon.. I told her I felt like I was taking advantage of Cancer by getting new boob's (hopefully a bit bigger since I'm kinda small) and when I expressed this to her she said .. Heck why not get something out of having Cancer!! It invaded you!!! And ya know what she's right... None of us would chose to have BC but we do..

I want to reccomend you to read a few books it really helped me with my choices...
one is "Dr Susan's Loves Breast Book" its the bible for Women with breast cancer.. it's easy to find at any book store... and the other is called "Reconstructing Aphrodite" by Lorant*Eskenazi...It shares stories of 21 Women with BC. It has beautiful photograhs of their reconstructed breasts..

I also had the genetic testing which my insurance paid for... very simple blood test...

You will find your perfect choice .. Pray about it... Talk about it with your Family and Friends (us too!!!)... and it will come to you!!!

Calleen.....

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

For anyone who wants great, reliable answers about breast cancer, Dr. Susan Love's book has been the bible for many, many years. The last edition was the fourth edition in 2005, and I hope that it continues to be updated regularly, even though Susan Love has retired. It was my major source of information in 2000, when I was first diagnosed.

She also wrote a menopause book (2003 edition) which is also very good. My breast surgeon had a copy in her waiting room, and I had to wait long enough that I read all of the sections that interested me.

Joyce

DianeBC's picture
DianeBC
Posts: 3886
Joined: Jun 2009

So, you had bc twice Joyce? Did you have any kind of hormone therapy the first time?

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

Diane, yes, I had bc twice: in 2000 it was invasive lobular cancer, with DCIS nad LCIS, caught very early. This year it was DCIS: my doctor said that my life expectancy should not be impacted by it, but I needed to have a mastectomy.

I was on Tamoxifen for six months in 2000, but I developed blood clots so was taken off of it. I now know that I have a Factor 5 Leiden (I call it a mutant gene) that predisposes me to blood clots. If you don't have this gene, it's rare to develop blood clots. Even though I developed blood clots, I would never discourage anyone from doing whatever they can to fight the beast.

Joyce

Jeanne D's picture
Jeanne D
Posts: 1867
Joined: Mar 2009

I am glad that you seem to have some peace now in your decision. It is a difficult decision to make.

I just want you to know that I have had breast cancer twice in my lifetime too and I am still here and doing fine. I first had it over 23 plus years ago and then I had a NEW cancer in the other breast this year. I had a small lumpectomy with rads, both times. I am very grateful for the choice that I had and the choice that I made.

One thing I will caution you is that you will be having reconstruction, not breast enhancement. Several on here have discussed openly how they went into the surgery thinking enhancement and then realized it wasn't. Be sure and see lots of pictures and even talk with other bc survivors who have had the surgery. I think that will help you too.

Good luck to you!

Love, Jeanne

Calleen's picture
Calleen
Posts: 412
Joined: Jul 2009

The book I mentioned above has both pictures of breast that have reconstruction and implants... I just hope I have enough belly fat to make them a bit bigger... just wishful thinking.. I've been eating lots of ice cream hoping to fatten up for my surgery but I think it's going to my rear too!!!!

brenda247's picture
brenda247
Posts: 124
Joined: Apr 2009

Yes like they all say that decision has to be yours.. but i will tell you my doc gave me that decision and i thought about it talk to him about what was best for me.. everyone is different but i think i done the right thing i had a masectomy which i didnt want it just was safer for me.. so you do whats best for you.. prayers are with you!!!!!

survivorbc09
Posts: 4376
Joined: Jun 2009

Yes, sending you lots of prayers!

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