2x Survivor that needs to vent!

2xSurvivor · November 2007

2xSurvivor · November 2007

Hello~ My name is Darcie. May 14, 2001 I was diagnosed with Infiltrating Ductal Carcinoma. I underwent a lumpectomy and lymph node removal. I was only 26 (2 weeks before my 27th b-day). I was single and still "free to the world". 6 months later I met the guy of my dreams and we got married. He stuck by me thru it all. Chemo & Radiation.....it didn't matter to him. On April 12, 2007, the cancer returned. This time I had a mastectomy. I basically had no other option. I was 32 years old, married, and the mother of a 3 year old son (my miracle baby). On November 6, I underwent a TRAM Flap reconstruction surgery. I just couldn't deal with the "missing one boob". I didn't feel whole. I feel so much better psychologically now, but I am a little worried. From where I had Radiation Treatments 6 years ago, my "new boob" is not healing very well. One corner has basically turned black like a very thick scab. I am very concerned that the doctor will have to operate again. I am so tired of being cut on and poked at. Can anyone give me any suggestions or inspirations relating to TRAM Flap after radiation? I would really like to know if I am the only one out there.

nash · November 2007

Hi, Darcie. I just wanted to say welcome. I don't have any experience with TRAM flap and radiation--you might want to also post over on both the reconstruction board and the radiation board. I do know that radiated skin doesn't heal as well as non-radiated skin. Has the surgeon seen the black area? With my limited knowledge of the topic, the black area sounds like necrosis to me. Best to have the surgeon look at it.

Sorry you've been through two primaries---have you been BRCA tested?

There's another section of the board for woman who have had more than one primary--you might want to check that section out, too. Glad you found us--the support you'll get here from everyone is tremendous.

chemo072 · November 2007

no experience to add, just wanted to say how much I appreciated your story. guy of your dreams and a miracle baby to boot! way to go on living your life.

sorry for all the cancer though, what a drag.

hope the skin issue gets figured out. and boy are you tough to have gone through everything you have. wow.

2xSurvivor · November 2007

Thanks Nash and AmyaM for your comments. The extra encouragement means a lot. Nash...regarding your question relating to the BRCA test...No I haven't. When I was first diagnosed, my insurance wouldn't cover it. Now a second time, it seems to be a waste in my mind. What difference is the test going to make? I am the first in my family to be diagnosed with Breast Cancer. My Oncologist has linked my cancer to a drug that my mother took when she was pregnant with me in order to keep her from miscarrying. My surgeon has seen the blackness, but he is not really telling me anything. He just keeps saying that it isn't healing like he planned or wanted. It really scares me. I finally have my breast back and my thoughts are "Will I lose it again?". I'm really scared. I go for another check-up tomorrow (Nov. 26). Hopefully, my mind will be at ease afterwards. Again, thank you both for your thoughts and comments. It's really helpful.

Liezel · November 2007

Hi Darcie! Thanks for telling your story. I also have no experience with Tram flap, however I had recon in August with Silicone implants, and my radiated breast also not reacting like ps thought it would. I have darker patches all over and fat that has settled very funnily across the breast. PS says we'll have to do another surgery to fix it, but I do not want to go through it. I am going to give it another few months.

I really hope your check-up goes well. Hugs.

nash · November 2007

Let us know how it goes at the surgeon, Darcie. It's interesting that you mentioned the onc thinks your cancer is from the drug your mom took--you're the second person I've heard that about. I can't remember the name of the drug, but I know which one you're talking about.

As far as the BRCA testing goes, I had it done b/c I've got kids, my mom has BC and my dad died of pancreatic cancer and was an Ashkenazi Jew (pancreatic cancer can be BRCA2 in that population). The docs thought for sure I'd be BRCA positive, but wasn't. There are also some vaccine trials specific to BRCA cancers. And if one is BRCA positive, there are ovarian cancer issues to look out for. But without the family history, you're right--it's unlikely you're a BRCA carrier. It's just interesting that you've had two primaries at very young ages.

Really hope you heal up soon. Like I said, keep us posted. Smile

2xSurvivor · November 2007

Thank you all for your support. I went for my check-up yesterday (Nov. 26). Of course, good news and bad news. Good news is that my flap incision is healing excellent. The bad news is that the surgeon had to remove more of the flap due to the blackness. I am also now starting to get an infection. The surgeon has promised me that I won't end up losing my new breast again. I hope he's right. Psychologically I have been up and down so much that I am tired. But then I look at my 3 1/2 year old son and I know I have to keep pushing forward. I am now on an antibiotic and medicated ointment. I also have a hole in my flap that can hold 2 - wet 4x4 gauze pads. Thank goodness for my husband. I believe support and attitude is the biggest thing to survival. Look at me....2 times now!

Nash~ I have been having trouble with my Gyn doc. Before this last bought of cancer, I already had cervical issues due to the Tamoxifen. Now...I am arguing with her on at least removing my ovaries. I would really like to have a hysterectomy, but she doesn't want me to go through menopause at 33. I would much rather go through menopause than cancer a 3rd time. I am on the search for a new gyno. I can't think of the name of the drug my mother took either. I think I may still have "chemo brain". I can't seem to remember anything anymore.

Again, thanks for all your support. This website has already helped me.

2xSurvivor · November 2007

Nash~ It just hit me. DES was the name of the drug my mother took. My Oncologist linked my first cancer to this drug. He also stated that more women in this drug era are on the rise for being diagnosed with Breast or Cervical Cancer. My mother keeps blaming herself for my problems, but I just keep telling her, "Look what all you would have missed without me being here". Positive attitude helps.

To the rest, I found a very inspirational poem that says it all. Here it is:

God Heals

Remember when you heard the words -
and your mind went blank - you were in another world
God heals
Remember in your darkest hours -
when all that surrounds you is pain and sorrow
God heals
Remember friends' prayers - your family's encouragement
- glimmers of hope from everyday angels
God heals
Quiet...you can hear Him now -
always there - yet never this close
God heals
It's just another day -
yet everything has changed - and you hear yourself say
God heals
Birds are singing -
the sky is a beautiful blue - flowers are blooming...
God heals
Truths that you knew as a child -
awakened again with new understanding
God heals
Remember when others can't -
that life is a gift - each day to treasure
God Has Healed

BethNY · November 2007

Make sure you take good care of your open wound-- it is essential to proper and speedy healing-- also eating lean proteins and calcium can help to speed healing.

I vote for getting a new GYN too. You need to find a GYN thats on par with young women and cancer.

Your first dx was in 01...back then who did you turn to for support?

I was dx in 04, and at that point I found the YSC, and they were huge... going to their yearly conferences is such an amazing time every year...

Anyway, I posted to you in the reconstruction thread, but I wantes to tell you it's highly unlikely that you would lose the flap-- you just have to take care of the wound... if your PS says you need a small surgery i wonder if he could repair the problem by using AlloDerm?

Anyway, I'm glad your husband is such an amazing guy. I was dumped and devastated when I had cancer. Then months later, I met the guy of my dreams--and we've been together for a year and a half, and I'm so lucky in love. It's awesome meeting girls like you-- I feel like we've walked in such similiar shoes.

vent away when you need to-- we'll always be here to listen.

nash · November 2007

That was a beautiful poem, Darcie--thanks for posting that.

DES--that's it. The woman I know whose mom took it said both she and her mom ended up with bc from it. Crazy stuff.

Interesting that you had uterine issues from the tamoxifen. That's what makes me nervous about the stuff. The subtype of bc I have likes to spread to odd places, including the uterus, and I'm just not hip on having to worry about both mets and a new primary cancer there.

I'm sorry to hear that you've got an infection, but that's good that the surgeon is confident things will heal up OK. Thank goodness you've got a supportive husband--that makes all the difference.

Hugs and good vibes coming your way.

veggievet · November 2007

Dear 2X Survivor,

I'm so sorry that you are going through this again.

Regarding genetic testing, it is important to know that having two primary breast cancers is one of the red-flags for a hereditary cancer syndrome even if you don't have a strong family history of breast cancer. I urge you to insist on a consultation with a genetics expert. I am very happy to help you find a genetic counselor in your area. You can private me or e-mail me at: sueanddan@att.net.

I understand your questioning why given that you have already had breast cancer twice that you should be concerned about a BRCA mutation: if you carry a BRCA mutation you are also at very high risk for ovarian cancer, and your genetic test results can help family members better assess their risk for cancer. I know that you talked about just having your ob-gyn remove your ovaries but if you are at high-risk for ovarian cancer there is a specific protocol that absolutely should be followed and it is generally recommended that the surgery be done by a gynecologic-oncologist rather than an ob-gyn.

Survivor, I really think you should start by seeing an expert in genetics before making any decisions. Although DES taken by your mother *might* explain your breast cancer, it might not explain it. Your young onset of two primary breast cancers is a huge red flag for BRCA!

Young survival coalition's website is great at: http://www.youngsurvival.org . I also encourage you to visit the FORCE website which is devoted to hereditary breast and ovarian cancer at: http://www.facingourrisk.org/ for more information on genetic counseling and testing.

I hope this is helpful. Please take care. I'm an 11-year breast cancer survivor.

Warmest regards,

Sue

2x Survivor that needs to vent!

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