FACING DOUBLE MASTECTOMY

nancyluvspink · February 2008

nancyluvspink · February 2008

Hi everyone! First of all, I have to say this. I have felt so alone for so long. I am absolutely elated that I stumbled across this site. All I ever say to my boyfriend is that I want to talk to people "like me". (having bc more than once) and I have finally found you! I LOVE YOU ALL. My name is Nancy, I am 42. At age 35 (2000), I heard the words, I'm sorry honey, you have breast cancer. It was in my left breast. I had a lumpectomy, lymph nodes removed, chemo and radiation. Since I was (-), there was no further treatment options for me, I was just told to go on with my life. And I did. In 2006, same month as last time, I found out I had bc in my right breast this time. I was told that it was a totally separate bc. I went through the whole course again. Lumpectomy, lymph nodes removed (One positive this time), chemo and radiation. Then I had genetic testing done. Yes, I have BRCA2 gene.

In Dec 2007 I had a hysterectomy, thinking that ovarian cancer is not going to get me. Now I am facing a double mastectomy. I am scared and don't know details on the choices, (tram - diep - expanders? ) I would appreciate anything anyone has to say.

lvtwoqlt · February 2008

Nancy, I am sorry that you are going through this for the second time. I have only heard the words once but had 2 previous scares with ADH (once in each breast). I discussed my options last May with my PS and we decided on the expander/implant choice. I had my bilat and the expanders place last June. I did not need any rads so I don't know how you will be affected by the radiation treatments that you have had. I have found a lot of information on the breast reconstruction board regarding the different types of recon.

Good luck on your decision.

Sheila

AnneW · February 2008

Hey, Nancy,

I know what you're going through! I had my first cancer in 2002 (age 44)--had lumpectomy, rads, ovaries removed, and Femara. In 2007 I had a different cancer in the other breast. Still Stage 1 (and I'm BRCA-)--so off with the breasts. Enough's enough.

I'm 4 months out now, adjusting to expanders. I considered DIEP, but wasn't willing to travel for it or scar up my body for it. I would never do any form of muscle transfer because I'm very physically active. I considered no reconstruction at all, but I do like the look of breasts...and hate the idea of falsies.

I learned tons from this site, especially reading ALL the threads in the reconstruction topic.

Good luck moving forward. It is not an easy decision.

Anne

mke · February 2008

Sorry you're going through this Nancy. I had my first BC on the left, second 8 years later (different kind) on the right. Had rads both sides, chemo for the second and lumpectomies both times. Just discovered a third back on the left and had a bilateral mast. 2 days ago. I'm 20 years older than you which no doubt influenced my decision to not have any reconstruction. I just didn't want to face anymore surgery.

So far the bilateral mast. has been a piece of cake. I was nauseated for the first day, but walked out of the hospital 24 hours after the surgery. I'm having very little discomfort so far, a severe twinge if I'm not careful about moving my arms, but not much if I'm cautious. Tylenol #3 has kept everything under control.

I think there is a lot of comment on the reconstruction topic. And I know a couple of women who are very satisfied with the results of their reconstructions. I think that the Susan Love breast book deals with reconstruction in some detail too.

Good luck to you.

PS I forgot. I got a book "The Breast Cancer Survivor's Fitness Plan" which has exercises based on the type of reconstruction. I really haven't looked at them, but they might be useful to you.

HappyTrisha · February 2008

Nancy, I didn't get there the same way you did but I ended up having both breasts removed (the second breast was elective) and it was the most freeing thing I ever did for myself. I am someone who would have had a worse time worrying every time I had to have a mammogram than obssessing about not having real breasts!

I had reconstruction but waited a good amount of time between my radiation and the reconstruction - it was probably a year +. In the meantime I wore prostheses and nobody could tell the difference.

The best purchase I ever made was The Breast Reconstruction Book by Kathy Steligo. I got it on Amazon.com and it came in two days. The book gives you details on every kind of reconstruction there is, along with the pros and cons, recovery time, etc. It definitely helped me make the decision on which type of reconstruction to have.

Good luck.

Trisha

Binney4 · February 2008

Hi, Nancy,

It may pay to consider all the options, for your own peace of mind. Here's a site started by a bc.org sister to help women understand what the problems and advantages are to having NO reconstruction: www.breastfree.org

It includes women's stories; resources for bras and camis, lingerie, swim suits, and prostheses; even pictures to help you visualize the results.

Tough decisions. Hope that helps!

Binney

wishiwere · February 2008

Nancy, just wanted to say I'm sorry you've had this 'new' cancer but hope and pray you get through everything with a bright future!

I've had the uni mast, but not done reconstruction, so can't help there at all. Good luck with your decisions!

nurse1breastcancer2 · March 2008

Hi everyone. First time on the site. I just found out yesterday that I have a new primary in the same breast. First dx. in 1999 with Stage 1 triple neg. Had a lumpectomy, chemo and rad. Now faced with bilateral mastectomy but need a PET scan first. Nervous about that. Hopefully it will be fine. Probably more chemo. I have found wonderful information here.

Jackie

GrandmaWolf · March 2008

Mke,

You sound like my mirror sister. I think I am also about your age and like you,I had a left side dx with the usual lumpectomy/Rads. Eight years later, last Sept 9^th a second cancer was found on the right side. Again a different type, hence a 2^nd primary. I was just about to do the 2nd lumpectomy routine as you did, when an MRI showed up yet a new 3rd primary (again different type and only grade 1) back in the left breast.

I have read of the possibility of doing a 2nd left side lumpectomy with brachytherapy radiation, but after being informed that it was still in clinical trial, and more surgery and radiation to that breast might make any recurrence more difficult to detect, I think I am also facing a bilateral in the next month. Like you, because of my age, I will bypass all the additional surgery involved in reconstruction...just to get on with my life. Making this decision has produced much anxiety as any one out there can relate to. Your last post has been very encouraging.

Thank you for sharing it...and any other additional suggestions would be welcome.

Grandma Wolf aka Dakota

karen34 · April 2008

Hi, I am 34 and Stage IV breast ca. I have two children. I was dxd last august, I have went thru chemo, and now I am about to face a double mastectomy but not for the usual reason. I am facing it for pain relief. I have been told by the onc., sugeon and ps that this will not extend my life only relieve the pain. I am hoping they can get the insurance to approve the surgery. I am a DDD so having this done will be very strange for me, I discussed this with my husband and daughter and most importantly the Lord before making the decision to go ahead. I hope I am making the right choice. I just dont know how long the recovery time will take. I am having expanders put at the same time if everything goes well. If someone could enlighten me on the recovery time I would appreciate it. Don't give up nancy there is always hope in the Lord. He has been so very good to me.

DXD 7/27/08, STAGE IV,1 TUMOR WS 6.8 CM SEV. OTHERS AND MET. IN LIVER

nancyluvspink · April 2008

Hi Karen, I do understand the pain. My breasts have been constantly painful since 2000 when this whole journey began for me. I am actually looking forward to the surgery and hoping that my new ones (once healed) wont hurt anymore like the ones I had. Good luck and god bless you

Nancy

bloomingrose · September 2010

Although reconstruction works for some women, it does not for all and I think we do not always know that going in. I am one of the women who started a reconstruction and now it appears that it will not be doable. Please realize PREVIOUSLY RADIATED BREASTS DO NOT STRETCH WELL! I had the initial implants placed at the time of my mastectomy and I wish I had not, it caused more pain and more limitation of how much I could move. I have also met two women who had to have them removed, due to infection mainly. I did not realize how much was involved - weeks, months, even years to stretch the skin to where it can take the final implant, another surgery with possible consequences and then it probably will not look exactly like your breasts to begin with. The other options - taking from the abdomen, etc. are also fraught with the possibilities of complications. The doctor told me that the abdominal surgery took 20 hours. Can you imagine?

Anyway, now I have to deal with how I am going to look without breasts. I actually am eager to get the implants removed, although my surgeon wants more time because I am still recovering from pneumonia (yes it has been quite the year.) I have grieved and grieved, but I am beginning to feel better. Reading stories of women who had double mastectomies and no rebuild and now are happy with their bodies is so encouraging. I think you have to think about all kinds of things when you think about a rebuild - your age, history, tolerance for pain and risk of infection and then decide. Good luck to everybody - we are beating cancer no matter what our bodies look like!

FACING DOUBLE MASTECTOMY

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