Should I have a Mastectomy?

LouLa

Should I have a Mastectomy?

LouLa

Hello everyone.  I'm new to this site.  Recently diagnosed on August 22, 2011.  Just turned 32 on August 10.  I have a strong family history of breast cancer.  My Grandma had breast cancer at the age of 70 and that was 18 years ago still going strong, my Mother has stage 4 breast cancer first diagnosed at age 64, and I have been diagnosed with invasive ductal.  I initially only had one tumor and when they did the MRI they found 2 1cm in size tumors behind the one.  They also said on the MRI that I had two swollen lymp nodes.  I was dead set on a double mastectomy.  Recently I have had second thoughts about it.  Not sure if I should be that radical.  When my Mother first got breast cancer in the one breast she did opt to have a double.  However her breast cancer recently returned in other areas.  So im not sure if there would be a benifit to having a double mass or not.  I would like to hear what all of you think and your stories please.

Thanks

LouLa

saffyres

Sounds a lot like my history (grandmother DXd in her 70s and later died of mets; mom DXd at 56 stage III, 3/18 nodes positive & still going strong 17 years later). I knew my day was coming, and had decided AGES ago - long before I had cancer that I'd have a bilat.

Glad I did - they found atypical hyperplasia in my so-called "healthy" breast. My breast surgeon was flabbergasted - he had pushed and pushed me for the lumpectomy. After surgery/pathology, he admitted I'd have been back the next year (or sooner) for round two with the beast.

My mom wishes she'd have been "allowed" to have a bilat, but "back then" it wasn't even discussed at all.

*edited to add:  But it's your choice! You have to make the decision that you're most comfortable with.

MustangIA

Hey, Loula -

I chose the bilat because of my family history - Mom had just had DCIS approximately 6 months before me and our family tree is loaded with both breast and ovarian cancer.  While my left breast was clear, multiple (three) tumors were found on my cancer side.  Even though I have recurred, it wasn't in the breast - sometimes the pesky beast can just escape.  I don't regret my decision for a bilat - I had recon and symmetry was important to me.  I achieved that, and in clothes, no one can tell.  Like Saffyres said - it is such a personal choice and you need to make the choice you will be comfortable with.  Never second guess your treatment choices - we do what we have do when we have to do it.  Good luck...we are here for you!

PattySprout

Have you (or your mom) been tested for a BRCA mutation?



Crazy family hx here. My mom had lumpectomies the first time around and had a reoccurrence 18 years later.



I had the bilat, no hesitation, before knowing I had a BRCA1 mutation. Best decision I have ever made.



Anyway, I recommend talking to a gene counselor to discuss risk. Even if you do not want to do the gene test.

LouLa

Thanks everyone!  Yes Im going to have the gene testing.  I would like to get it done right away.  I meet wtih the surgen on Wed. of this week.  I will discuss all of this with him.  Still confused on what to do. 

wilmar

I did the bilateral mast because my 2.9 cm tumor didn't show up on a mammogram.  That was 4 years ago, and I'm still confused.  I don't cry about my chest any more, but there isn't a day that goes by that it doesn't take my breath away. 

 I am very glad to have skipped radiation by having the mast since I was node negative, but I still mourn having real breasts.

 It's a horrible decision to have to make.

lbarbados

Hi LouLa,

I opted for a Uni MX last month, and one of my deciding factors was that I am BRCA negative.  My mom has BC, and had the test been positive, I would have done a BMX/ oopherectomy with no hesitaion.  One of the other reasons was that nothing showed up in my non cancer breast on my MRI, whereas my cancer breast "Lit up".  Did anything look at all suspicious on your "good" side on the MRI?

 I am glad I made the decision I did, however, I may have to revisit this in the future if anything shows up in my remaining breast.  Also, now my PS has to try to match my "foob" with my natural side.  I totally see the other perspective in this...  But for me, the Uni was the right decision.

With your young age, your chance for a recurrence in the future increases with time...this is also something to consider. 

It is a tough decision to make... I strongly recommend that with your family history, you at least go for genetic counseling for the BRCA test.

***VERY IMPORTANT*** Make sure your insurance will pay for the test if you decide to do it! The BRCA test costs about $3300, and I had to appeal my insurance co's denial of my claim--even though I followed every step as spelled out in my plan summary! Luckily it looks like they will cover it after all, but what a headache!

Go with your heart, and best wishes... 

nitereina

what a tough decision. I'm sorry you have to make it. It sounds like your family history is strong, I say do it- you wont regret it, where is you may later. I had three tumors and 1 in each breast that was my decision. Also my turmors were grade 3- which is the most aggressive- that made me want to choose the most aggressive course of treatment. May I also talk to you about the DIEP- I chose immediate reconstruction after a skin sparring double masectomy. It was one hell of a surgery but I dont regret it and am so happy I did what I did. I can answer any questions you may have if you PM me. weigh your options, go with your heart and I'll be praying for you! hugs..Marie

mrsnjband

Just my opinion take it or leave it, but with your family history I would do the bi-lateral. NJ

survivor11

Gosh, you have had alot thrown at you in the past few days.

First and foremost, It is your decision. You already know in your heart what it is that you want to do, listen to it.

Now from a medical standpoint, with your family history and your young age, a BMX seems to be your best option. I know like it seems like such a radical and long road, but you have to keep your eyes on the prize and get to NED.

Good luck with your decision. We will be here for support no matter what you chose.

cookiegal

I think the tests will help with your answer!

LouLa

Thanks everyone!  I will keep you posted.

mikainsb

I am 34, and just had a bilateral.

Some thoughts which helped me decide between single and double:

* I said to my friend, "I would like to be able to breast feed my children one day," To which my friend said, "Your children would rather have a mother in the long run than be breast fed."

* If you keep a breast, every six months to a year you will have to confront your history when you go for mammograms. This means for about a week every year of your life, you will probably be waffling with the "What if I have it again" fear.

* And the silly one, if you have a double, they will match better if you do reconstruction.

I had a lumpectomy in 2008. I was diligent about follow-up mammograms, but "for the hell of it" had an mri this time around, June 2011. The mri found cancer the mammogram would not have seen for another year. My PET scan revealed something in the other breast that was not visible in the mri. I could have had a single, but it just seemed like it would be putting off the inevitable especially since there is a ton of breast cancer in my family (though I am brca negative).

 It is hard to let go of your breasts. But my sister said, "It would be harder to let go of your life."

Ultimately, for me, I never wanted to look back and think, "I should have had a double."

Good luck!

bevin

HI Loula,

Most surgeons will tell you that lumpectomy with radiation and tamoxifen is as successful as mastectomy.  I was offered a Mastectomy as well due to the fact I had a 2cm  invasive tumor and another area of non invasive cancer near by. Sounds similar to your situation.

I orginally was headed to mastectomy too and then my breast surgeon gave me some really sage advice.  He said do the lumpectomy since they are as successful. I can always change my mind if my BRCA gene came back positive or if I didn't feel I was agressive enough.  Once I remove my breast its gone so he said to take my time and go the least agressive way first since I couldnt make up my mind. 

I ended up with a lumpectomy and am happy I went that route.

Good luck with your decision. We're really lucky we are given different alternatives but its hard to decide. I also would suggest you may want to see a couple of Breast Surgeons and get a few consults. I saw 3 and it was good to have the opines of several doctors to consider when weighing your options. For me, given lumpectomy and mastectomy have the same success rates and  I wanted the least invasive surgery with the least amount of possible side effects , I was sold.

I liked my Doctors advice.

Bevin

LouLa

Hello everyone, I met with the surgeon today.  He said that because my tumor is so big that I would probably not be a good candidate for a lumpectomy.  We talked about doing a double mass with skin sparing (including nipple) so that after im done with treatments I will have implants put in.  I will be meeting with a plastic surgeon next wed.  Im having sugery next thursday.  Thanks everyone for your support. 

LouLa

Also, I started the gene testing process today.  Had my blood drawn and sent to lab.  I hope to know something in a couple of weeks.

Rennasus

I too had family history. My sister had a bilateral 27 years ago and is alive and well today. When I got cancer, I didn't hesitate. I opted for a BMX after being diagnosed with a 3.2 cm mass in my right breast.

After pathology, they found DCIS along with the IDC in the right boob AND atypical hyperplasia was hiding in the left! So I have never regretted getting a BMX. Reconstruction? Now that's another story. That has been harder for me than the BMX (due to complications).

Bottom line: Do what will bring you peace. It's different for each and every one of us. Best to you. 

bevin

HI Loula,  If you are interested in breast conserving surgery, a dear friend of mine had a 6cm tumor ( to large for lumpectomy), so she did chemo prior to surgery. It completely shrunk her tumor and now she has both breasts.  Perhaps neoadjuvant chemo is an option for you.? Something to consider anyway and ask your doctors about.  good luck with your decisions.

LouLa

Thanks everyone!  I would like to ask if anyone has had the skin sparing surgery?  If so how did it work out for you?

Thanks

LouLa

Thanks everyone! I had a double mastectomy on thursday. Went great! My lymph nodes were all clean!!! At home now taking it easy. Thanks for all your love, support, and prayers!



Thanks

Perrier

Dear Loula,

I opted for the bi-lateral mx and had my ovaries removed...(age 36) still here so not sad with my decision, but sad for the loss...My concern at the time was about being here to raise my children..I was reccommended the lumpectomy/ radiation..however, I could not face the thought of so much follow-up..and also being a Libra..I like things in balance! Lol  Its a personal decision, combined with your history,path results, and Dr's opinions.  For me I was terrified that I wouldn't find a recurrance in time, and I did not want to put my body through chemo again..it just seemed the right thing for me to do.  I was back up to speed physically within the year after all treatments, however, it took my spirit and mind a lot longer to heal.

stickwitch28

Hi everyone. I was diagnosed last May 2 2012 with IDC stage 2. My tumor on mammogram was about 2.2 cm but on core needle was 1.5 on its widest. My tumor is located on the inner apsect of my right bresast. My doctor prompted me to go for MRM (modified radical) because she believes its cost effective vs. lumpectomy with radiation. Well, here in the Philippines, cost is most of the time a major factor in deciding for treatment because of lack of health insurance.

I'm single at 34. I still would want to have kids in my future (before I was diagnosed I was looking forward to it next year). I'm waiting for my surgery schedule, and up to now I'm still thinking whether its lumpectomy+radiation combo or MRM.

Any thoughts on my dilemma?

dobie

Wow, what a tough position to be in and you are so young. So sorry. I was dx 5 years ago and choose a lumpectomy and radiation. It felt like the right thing at the time and I do not regret it, however, I was 55 and had health insurance. I now need a mastectomy in that same breast since they cannot radiate a 2nd time. So totally different place in my life. If I were in your shoes I would want to know what are my chances for reoccurrence and what are their recommendations for further treatment or prevention. Chemo, tamoxifen? You may want to consult with an oncologist to discuss treatment impact on further childbearing. Only then can you can make the best decision. I know there will be others here who have been in your exact same situation who will be able to give you good advise. My very best wishes for your healing.

stickwitch28

Many thanks dobie:) I am going for the MRM on MOnday May 21st. It was the best option for me. My oncolologist is still waiting for my FISH results for her2/neu for my treatment plan after. Hoping is negative:)

More blessings to you. Take care.